Dancing with the Crab

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.

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30 Responses

  1. Kathi says:

    Oh, Knot, I don’t even know what to say. Except you’ve expressed the crazy dance so well. Hugs, dear one.

  2. Agnès says:

    And what if we try to enter the dance and hold your shoulders and help you dance? Maybe the dance will be slightly less painful. Well, I hope it will.

  3. Barbara Westfall says:

    It’s not an uplifting or entertaining dance at all, and I understand wanting to quit all the motions. How did you find the most recent progression without tests? Or how did you decide to test this time? It is a delicate balance, a difficult and ongoing decision we face regarding our treatments with this diagnosis. Wishing you good and blessed choices and outcomes. XOXO

    • Knot Telling says:

      Barbara, the most recent progression was found incidental to tests for something else. (Cancer does not immunize us against other maladies, unfortunately.) In general, I can tell by where the pain if there is new bone progression.
      If I start having unexplained neurological symptoms, shortness of breath, belly pain or other new symptoms I will revisit the decision not to test.
      This is my personal decision and I do not advocate it for anyone. I’ve had a long run of dancing with the crab and I’m tired of it. Everyone copes in his or her own way, and even considering this decision is not for everyone.

  4. I love how you tell your posts. It is foolish, I know, but I hadn’t ever considered stopping the dance. But I don’t feel that I could. My young daughter and my husband rely so much on me, and will need me for years more, that I can’t take many chances, particularly having liver mets along with bone. After my last bout with sepsis, I can’t even take the common cold for granted. I have to weight the risks of every kiss from my little nieces. While I was never careless, I feel the need to be so careful now that life is sometimes dull. But it is life, and that is the point.

    My oncologist fills me with such confidence that I rarely question his advice. So, I am glad to read your post, which reminds me that it is my life to live, my decisions to make.

    I wish you all the best, my friend. I hope that your approach serves you well for many, many years to come. Although you don’t like the narcotics, I hope they will give you the relief they give me. As they say: may you live all the days of your life.

    • Knot Telling says:

      Dear, dear Kate, thank you!

      Nope – even considering this as a choice is not for everyone. You are taking the road that is the very best for you, and I am glad for you!

      Thank you for your kind words and wishes. Hugs.

  5. Heather says:

    I’ve only been dancing for 2 years. But I do think of when I will quit the dance as well. I’m curious as to why you may change your mind if mets move to visceral organs, though I clearly understand the pain management aspect. Please PM me if this isn’t appropriate for the blog. As someone with liver/lung mets that has mulled over these issues, I’d like to understand better.

    • Knot Telling says:

      Heather, any comment is appropriate for the blog. Thank you!

      Not everyone decides to quit dancing with the crab. I decided to quit because my mets are not immediately life threatening, and the treatment will probably impede my quality of life even more than it is now.

      If I had liver and lung mets, I would probably accept treatment… I think. I can’t know for sure because I’m not in my place.

      I’m not ready to die yet and my decision has to do with making the best I can of the life that is left to me. What I call “soft organ mets” would change the music, as it were, so I would have to reevaluate the dance.

  6. Shari Larsen says:

    That is so well said! I have been in treatment for my bone mets since April 2007; if it’s a dance, then it’s no wonder I am so tired! At times, I feel like I am just playing a waiting game, waiting to see when it’s going to spread past my bones. As much as I would like to quit at times, I feel like I need to keep going, at least for a little while.

    Quitting treatment is a highly personal decision; I can tell you gave it a lot of deep thought before you made your decision. It’s not an easy decision to make, whether you stop or whether you decide to keep on going.

    • Knot Telling says:

      Yes, Shari; it’s a very personal decision and no one can make it for us. I feel like it’s a waiting game, too. You expressed that perfectly. Like waiting for the other shoe to drop.

      Yes, I have put a lot of thought and prayer into this. I am not looking forward to dying; I want to live as well as I can for my allotted span.

      Thank you so much for this thoughtful comment.

  7. Susan Zager says:

    Wow KT I don’t know how you do it. I love the way you write and your dance analogy is spot on. I just hope the pain is controlled, and things don’t spread to other organs for a very long time. Sending you lots of love, light, hope and hugs – Susan

  8. Gail says:

    Exactly! I wish I had cut back on testing for all those years the tests came back stable. No longer stable so I’m back in the dance with the crab! Be well!

  9. Melissa Ross says:

    I am fast approaching five years of dancing, and I’m not ready to stop yet. But I have been very lucky in the effectiveness of treatments with high QoL ( quality of life). Perhaps in 5 years I will feel differently, if I’m lucky enough to still be here. I think of the dance with the crab as little as possible, I am too busy enjoying the other dances in my life.

    Your writing is so wonderfully eloquent, it is such a pleasure to read your posts. 10 years with MBC is quite a milestone. I hope you are here, dancing or not, for a long time to come.

    • Knot Telling says:

      Thank you for such kind words, Melissa.

      It sounds like you have found the perfect dance steps for you!

  10. Paula says:

    I hope you have many more years of writing for us Knot. I love hearing your perspective on things. You are very brave to continue on even though it is a struggle for you. I pray for your comfort and strength every day. Hugs!

  11. Carolyn says:

    I love your perspective and appreciate how well you express your thoughts so we can share them with you. For now I couldn’t even guess if I’d be able to make that decision – to stop tests and treatment should I live 10 years. I won’t live that long though, not with IBC deciding to join the MBC party in my silly body. I personally celebrate your longevity with this horrid disease and applaud your courageous decisions. Dancing with you. xoxox

  12. Maxine D says:

    KT I think you have addressed a ‘sacred cow’ here – and I admire your courage to take control of your life and decide what treatment you will accept and when.

    I think many feel dis-empowered by the medical profession when they are fighting something big like cancer, and feel they cannot get off the merry-go-round of treatments and and examinations of all kinds, and trials, and changes of meds etc. etc.

    Prayers and hugs

  13. Elizabeth J. says:

    So well expressed. I understand leaving the dance. There is more to living than existing. Metastatic cancer does often feel like you are Alice, lost in the rabbit hole, no idea where you are going and no way out.
    My dance has not been very long and I have no idea at this point how it will go. I hope my current treatments are effective for a long time as I really do not want to go on to whatever is next. I want to live, but have faith in God so I do not fear death, so quality of life will probably be a big factor for me. (I do have a lot of fear of pain!) One concern I have is I suspect that if the time ever comes that I chose to leave the dance, that I will have strong opposition from my family to stay with the dance no matter what.

    • Knot Telling says:

      I’m sorry you’re dancing with the crab, too, Elizabeth. I join you in hoping for many, many years of effective treatment.

      If you do decide to leave the dance, there will be strong opposition. I have to remember to patient and kind and supportive with the people who love me, to remember that they are suffering, too. I do not always succeed.

  14. Lynn says:

    Dancing or not dancing is a personal decision. What is a comfort here for me is the number of people that have this disease at this stage. Sometimes…you just feel alone. Like you are the only one. I think it’s hard for anyone not walking in your shoes to know just how you feel. They can try…it’s just not the same.

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