The following are excerpts from my book, The Booby Blog: A Cancer Chronicle, to be published in e-book and printed formats in fall 2014:
On “fighting” cancer:
Lindy asked me, “How do you feel about your body?” and I told her instead what I don’t feel: I don’t feel any of those stereotypical media representations of cancer as The Enemy. I don’t relate to the battlefield metaphors. I don’t feel I need to “fight” the cancer. I feel the need to surrender to it instead. To accept it. To consider how my life has been out of balance and this, perhaps, is the result.
It’s a fine line; I don’t believe I “did this to myself” by any means, but my body has done something potentially self-destructive, perhaps entirely randomly—but if I had not gone through so much stress in the past few years, if I’d been taking somewhat better care of myself, perhaps my body could have resisted the disease response. I will never know the truth about that, if there is such a thing. Maybe that is the point—to find meaning, to make meaning for myself out of this, I must find a central truth.
On the sudden popularity of my left boob:
Yesterday I got to spend about four hours with my dear friend Marilyn, who accompanied me to two new doc appointments—the oncologist and the radiation oncologist. Much of the time was spent in waiting rooms and in exam rooms. We behaved like teenagers called to the principal’s office, talking and giggling and having a good time overall. At one point, Marilyn asked, “Just how many people have touched that boob since all this started, anyway?”
Let’s see: two mammogram techs, three ultrasound techs, one MRI tech, three radiologists, my primary doc, the oncologist, the radiation oncologist, the janitor—oh, no, he doesn’t count, I guess—so…12. I’m thinking there’s a song in this, to the tune of “The Twelve Days of Christmas,” perhaps!
On pain and male doctors’ assessments thereof:
My only complaint now is that, as you might suspect, my breast and left underarm (where they removed lymph nodes) are still swollen and painful. Some of the articles I read before this surgery said you could go back to work the next day. “And in just a few days, you’ll feel fine.” Really? Who makes this stuff up? In one of the least fun pre-surgery procedures, a radiologist injected my breast with radioactive dye. The male tech had predicted it would feel “like a TB test.” I involuntarily yelped, “Shit!” out loud when the doc did the injection. It was very painful. Why didn’t they deaden the breast, as they had for biopsies, I asked? “Well, then you’d have to have two shots,” the doc replied. “Let me tell you,” I said, “the lidocaine shot is a bee sting compared to that one.” As I left the department, I couldn’t resist saying to the tech, “How would you feel if you had a needle stuck in your most sensitive body part?” They’d have to give men a general anesthetic! (Sorry, guys.)
On my new obsession:
As I sit here drinking my noxious-tasting Shen Qi Wan/Dau Shen (dissolved in green tea), I am struck by what I think of as my higher power’s sense of humor. You know how people love to say, “Watch what you ask for—you might get it”? There’s a corollary: “Watch what you laugh at—you’ll soon be doing it.” Much of my life I have privately rolled my eyes and snickered at people who are obsessed with their health, buy every new supplement that Dr. Oz or Dr. Weil suggests and forever seem to be seeing a new health-care practitioner of some kind or another.
And now? This is my life. I (who can barely get a pill down) am currently taking 20 different supplements, vitamins and prescription drugs (some multiple times a day, and some are two pills each time). . . .I am practicing gratitude for all these pills and all the people who are telling me to take them. One of the things I am taking is a flower essence called Blue Pentangle prescribed by my nutritionist. It comes with its own affirmation: “I am competent.” The nutritionist suggested I say, “I am competent to meet this challenge.” Trust me, there is no eye rolling or snickering going on now.
The upshot of all this is I am beginning radiation next week. Yesterday I went for a “planning session,” at which I had a CT scan and the technician wrote in hieroglyphs all over my chest with a fat black Sharpie (shouldn’t there be some really special kind of marker for writing on human skin?) and then covered the marks with clear tape. Next week, at the final planning session, they’ll mark me up with permanent tattoo dots, so each time they can aim the radiation to a pinpoint. I had thought that after one planning session I’d start right into radiation the next day. “Oh, no, this is very complicated,” the tech told me, which had the amusing and paradoxical effect of reassuring me that they were taking it all very seriously—and making me a bit more nervous than I already was. What if they incorrectly enter an algorithm and fry my shoulder or left foot instead of my boob?
On suffering and comfort:
I realize now that the failure to acknowledge suffering is a huge mistake on the part of our medical community. To acknowledge suffering must trigger the desire to “fix,” the clinical obligation to do something—offer advice, a different drug, another idea. But in fact it is not the “fix” that is most important or needed. It’s the acknowledgement, the hearing of another’s pain, which lessens the suffering. Got a great new drug I could try? Wonderful. But could you put your hand on my shoulder and say, “I am sorry you are feeling so bad,” “I see that your skin is so burned. How does it feel? Like itching, or stabbing, or hot? Tell me about it.” We need to tell someone about it to release some of our suffering. We need to speak it out loud.
On keeping a sense of humor:
And, speaking of laughter as the best medicine, so many friends have asked, “How’s the radiation going?” and then in the next breath they’ve said—with no sense of irony or realization of what they’ve articulated—“Well, you just look radiant,” or, “You seem to be glowing.” I am not making this up. While I am willing to believe I look pretty darned good these days, I find it hysterical that our unconscious minds deliver up the right words—literally!—for my situation.
On the silver lining:
One of the most shocking discoveries I made about the extreme vulnerability of being sick was that the vulnerability that was most painful wasn’t feeling exposed physically or emotionally to other people (although that was indeed painful) but that illness stripped me down to my core, and I saw myself more clearly than ever before. I saw my attributes and my failings, my foolhardy way of walking through life, what I had lost or missed and could never regain. I saw myself naked, as if seen by God, and I was humbled. One of the lovely side effects of that gut-wrenching experience is that I am no longer quite so afraid to allow others to see me. I can now choose to be more honest, vulnerable and emotionally bare with others.