While this blog is inspired by my mother, and originated in part as my way of working with the reality of her cancer, I have not written much in the way of directly addressing how things are going for her.
Last Thanksgiving, she slipped on a wet linoleum floor and fell, shattering her kneecap. Several months earlier, she had entered a new chemotherapy drug trial. In order to have surgery to repair her knee, she had to suspend participation in the trial, but was able to resume a few weeks later, and has been on the drug ever since. This drug, avastin, seems to be having a positive effect on her cancer; her last CT scan showed no evidence of disease (which in all likelihood means, in her case, not that the cancer is gone, but - next best - that the tumors have shrunk so much they aren't showing up).
At the same time, this chemotherapy has a negative effect on the body's ability to heal, and progress with her knee has been slow and accompanied by recurring infections at the incision sit e.
We – I - ten d to envision the world of cancer as having a landscape marked inevitably and invariably by destruction. Yet my mother has crossed the threshold into this realm as if it offers her an opportunity to create. She is as much a creator here, in the world of cancer, as she has been in every other aspect of her life. And in this work, as with everything she’s ever done, I notice how she never comes to a resting place of certainty, but keeps traveling with her ideas and experiences as they shift.
Several weeks ago, she reflected on what was then the focal point of her treatment:
I'm involved in a wonderful exercise in some sort of fortitude.
The pin in my knee is trying to exit my flesh, like shrapnel, or a nail popping through sheetrock. Normally it wouldn’t be a big thing for them to make a tiny incision and pull it out, except that I'm on avastin. We're all trying to figure out what pin-pulling means with regard to the effect of the avastin on healing. I'm hoping to go on vacation to the high desert an hour and a half outside San Diego in a few weeks, and the question is whether to pull or not to pull right now. Or maybe to hammer it back in instead of extracting it, at least for now. I can actually live with the bump of metal as long as it doesn't start opening up the skin.
So I was talking about an exercise in fortitude. Here it is: I was making myself insane for a week or so, fretting over the vacation plans, looking at my knee every hour to see if it was worse, hearing the "Jaws" theme song in my sleep, etc. And then somehow, out of nowhere, I simply slipped over the edge of that cliff I'd constructed and let the whole thing go. It will be what it will be. Turns out, my worries have not really been about the knee itself. They were about trying to control the knee. As long as I can let go of the no-win game of trying to control, then I'm free as a bird. This is not about the knee or the vacation. It's about letting go.
Now, how to stay in that delicious space . . . I guess that's the work of living with cancer. Kind of an interesting assignment.
Then a couple of weeks ago, processing the doctors’ decision that the pin should be pulled, and that they would do it eleven days prior to departure, my mother found herself engaged with another aspect of what she has called, “the work of making my way with cancer.”
I've been contemplating my changing body – in this case, a knee without a pin in it -- and have worked myself into a bit of an "imagine-the-worst" mode. The hope here with the pin coming out is that this will be a rare aberration on my chart where my function improves rather than just continuing the general decline. And I was thinking how strange it was to be expecting -- maybe -- a real improvement. And wondering was I silly to be expecting that, to be extravagantly gambling that it would turn out better. Maybe it will get infected inside the bone and I'll die of my knee -- maybe a massive heart attack like Grandpa. All these thoughts were mixed up together.
Dad and I make easy use of the term "the new normal" when we are taking stock of our life together. Because of the reference point changing almost month by month, we've come to know better than to measure things against a monolithic norm. Severed from assumptions, we try to feel at home on shifting ground.
Last week, the pin came out. The procedure went smoothly – then my mother realized that the event of losing the pin, while perhaps the least significant of the many somatic losses she has experienced over the past twenty-six months, nevertheless required its own kind of attention, or attending.
I realized before I went into the hospital yesterday that I wanted a good look at the x-ray they would take when I arrived, to see an official image of the pin pushing up the skin. And I knew I'd want to see the exposed pin while it was still embedded, still of my body. I needed to gather these fleeting bits of data on what my body was that day. Since it's such a changing thing, my body, not something I count on or can refer back to any time I want, I wanted to capture what it has been as a matter of record. I felt strongly that if I could "catch" or snag some of this data, then it would be easier to let go of the former self, easier to internalize the change. The missing pieces of the process were more troublesome that the loss of flesh and function.
I feel like in the last two years my body and my self have gotten separated, lost from each other in a crowd of events. It's not at all that I'm seeking to go back in time, to restore the old connection as it was. Rather, I feel like I'm playing catch-up to bring the [always] new body into reconciliation with my enduring self. Like I’ve stepped out of a movie for a few minutes and come back in and not known what was happening. Like I’m reading a story and constantly having to bridge places where a few pages have been ripped out. Some character has disappeared and another has arrived and I don't get it.
So yesterday, they whipped the pin out and I heard the ting as it was dropped on a metal tray and the words shot out of me "Can I have it?" and they said, “Sure,” in an utterly neutral way. And I said that I needed to internalize my body changes and they said nothing. I'm not disappointed in them. Their job is bodies and I'm glad they're mostly good at it. But I think words need to be spoken about the need to keep the self and the changing body joined meaningfully. It seems too bad that our culture isn't more comfortable speaking of both in the same breath. I hear their silence as a small, unintentional violence against the work I’m trying to stay with.
It's not simply mourning. In fact, mostly I reject the idea of mourning. That would be selling it short by putting it on a two-dimensional continuum. What I'm talking about is going forward in the fullness of it all. It's creative, honorable, necessary work, the kind of work we all desperately need. It begs for a conceptual language and to be recognized and carried out both personally and in a community.
I plan to hang the pin on our next Christmas tree.
Note: The above image is of one of the knee plays in Robert Wilson's operathe CIVIL warS.In theater, a knee play is one of the "joints" that holds together the larger scenes.