Here is something silly and senseless:
“You may not have lived much under the sea—” (“I haven’t,” said Alice)—”and perhaps you were never even introduced to a lobster—” (Alice began to say, “I once tasted—” but checked herself hastily, and said, “No, never”) “—so you can have no idea what a delightful thing a Lobster-Quadrille is!”
“No, indeed,” said Alice. “What sort of a dance is it?”
“Why,” said the Gryphon, “you first form into a line along the sea-shore—”
“Two lines!” cried the Mock Turtle. “Seals, turtles, salmon, and so on: then, when you’ve cleared all the jelly-fish out of the way—”
“That generally takes some time,” interrupted the Gryphon.
“—you advance twice—”
“Each with a lobster as a partner!” cried the Gryphon.
“Of course,” the Mock Turtle said: “advance twice, set to partners—”
“—change lobsters, and retire in same order,” continued the Gryphon.
“Then, you know,” the Mock Turtle went on, “you throw the—”
“The lobsters!” shouted the Gryphon, with a bound into the air.
“—as far out to sea as you can—”
“Swim after them!” screamed the Gryphon.
“Turn a somersault in the sea!” cried the Mock Turtle, capering wildly about.
“Change lobsters again!” yelled the Gryphon at the top of its voice.
“Back to land again, and—that’s all the first figure,” said the Mock Turtle, suddenly dropping his voice; and the two creatures, who had been jumping about like mad things all this time, sat down again very sadly and quietly and looked at Alice. (Lewis Carroll, Alice in Wonderland, chapter 10.)
Do you know what else is silly and senseless? Or at least feels that way? Dancing with the crab—living with metastatic breast cancer (MBC, Stage IV breast cancer)—for a decade.
At first there are novelties and it’s a dynamic situation. Then routine fits in, the routine that the Metastatic Breast Cancer Network (MBCN) sums up perfectly: scan, treat, repeat. Life becomes a whirlwind of diagnostic tests and exams, treatments, more tests, more exams, more treatments. Eventually the treatments stop working, so they change the treatments to something else, something they hope will work for a while.
Rarely in Stage IV disease, there is remission. I won’t say it never happens, but it’s not a realistic goal and it is very, very rare.
So, what does “work” mean in the world of metastatic breast cancer? The treatments are not meant to bring about a remission, much less a cure. They are meant to slow down progression of the disease, to forestall death. Meanwhile, the treatments take their own toll, in addition to the ravages of cancer. Extreme fatigue, radiation burns, nausea and vomiting, compromise of the immune system, peripheral neuropathy, joint pain and other musculoskeletal pain, loss of all body hair… and the list goes on and on.
Now take all that and let it cycle for a year, two years, three, five, ten years. Because although the usual prognosis with a Stage IV diagnosis is two or three years of life, about 22% of patients reach the five year mark (American Cancer Society statistics) and some people even live for ten years past diagnosis and beyond.
That is a long time to dance with the crab.
A couple of years ago I decided to climb up out of the rabbit hole of scan, treat, repeat: I stopped treatment except for comfort measures like pain control. Then I decided to stop the tests. I made this decision because I don’t want to go back down the rabbit hole. I decided I have enough to cope with from the cancer and the pain relief and the persistent side effects from previous treatment; I don’t want to add any more to that, especially since it will not make me better.
My mets are all in the bone, including the most recent progression. Bone mets are not as lethal as metastasis to organs like the lungs, liver and brain. If I start having symptoms that are associated with mets to those organs, or if my pain becomes difficult to manage with the usual medications, I may change my mind. But not until then. I’m tired of dancing with the crab. It’s exhausting and sometimes it feels as silly and senseless as the Lobster-Quadrille.