Another Level of Acceptance

All things considered, I think I’ve accepted my diagnosis of metastatic breast cancer rather well.  I mean, I haven’t been walking around in denial (and never had a denial phase, to tell you the truth).  I’ve taken a very matter-of-fact approach to it; neither am I unrealistically optimistic nor am I fatally pessimistic.  It is what it is.

And while I haven’t been dramatic in my approach to it all, there have been those moments of all-too-real clarity when I say to myself  “I am dying.”   Those stark moments come and go and I think I deal with them as well as I can expect.  But recently I read a book that shook me a bit:  Dying in Public: Living with Metastatic Breast Cancer by Sue Hendler.  Hendler was a university professor at Queen’s University, Kingston, Ontario, Canada.  She found a lump in her breast in the summer of 2007 and then shared her experiences along the way in a newspaper column for the Whig-Standard in Kingston, Ontario.  The book is a compilation of those columns and some unpublished work.

There was nothing particularly new in the book.  That is to say, there weren’t any breakthrough treatment options and no particularly inspiring moments that were on par with a fireworks display (for me anyway).  But it shook me because I can relate so closely with Sue.  An educator who loved her students, she wrote about her experiences and connected with many people.  She, too, faced her disease with an apparent matter-of-fact practicality.  And while she doesn’t seem to have been unrealistically optimistic, she certainly looked forward to living at least a decade into the future.

We folks with metastatic disease get the whole median prognosis thing.  2.5-3 years from diagnosis,  meaning about half die before, and about half die after.  Now let’s translate that sentence into a graph.

Capture

Schematic depiction of breast cancer survival times. From Dying in Public: Living with Metastatic Breast Cancer. Michael Grass House: Kingston, Ontario (2012): p. 112.

“The number three still floats around in my head,” wrote Sue.  “But with time, I’ve realized that it is a statistic.  and only a statistic . . . And, even with the recent news of the spread of my cancer, I will continue to hope to live–and live well–into the right-hand tail of the curve.”  (112)

Sue died one year later.

There is so much uncertainty in this sick game.  Cancer doesn’t give a damn that my mother has already experienced the death of one child and couldn’t bear to go through this again.  It doesn’t give any quarter to my sister who tells me, “I know you’ll get better.”  It flips the bird at twenty years of hard work to achieve the career success that I have.  And it smirks as I try to put the whole experience in perspective and make plans to deal with it.

One approach Sue took to the reality of a shortened life is to make a list of things she would never do.  In it she included things like be in a committed relationship, finish a book she was writing on the history of women, sort all of the paper in her office, do a chin up, and (my favorite) “Figure certain people in my life out.  Not going to happen.  Doesn’t matter how many lifetimes.  Some people are just too fucked up.” (116)

What is it John Lennon was to have said: “Life is what happens while you’re making plans”?

Looking at that schematic is not easy.  Indeed, how can you confidently make plans when you don’t even know if you’ll have time to plan in the first place?

The answer, of course, is to just keep going.  What the hell choice do we have?

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37 Responses to Another Level of Acceptance

  1. The Accidental Amazon says:

    I’m a stats cynic myself. Nothing like a grad school science degree to turn you into one. Meh.

    Sigh. This puts me in mind of the whole ‘bravery’ thing, which always bugs me. Like, what choice do you have but to live while you’re alive? It’s not like you wake up & decide, ‘Hey, today I’m going to be a super hero & be really, really brave!’ Well, maybe the costume would be fun. Or being able to fly…

    Scorchy, you don’t need me to tell you to keep writin’ and knittin’. And I’d be glad to go with you on that trip to the English countryside if you’re looking for company. xoxo, Kathi

  2. Hard for me to read…. very hard and I can only hope my mom does not poke around the blogroll on my own blog (although, it’s now moved to a separate page…as in, not right beside the posts) …… My siblings are just now realizing the enormity of her diagnosis when they asked me (gleefully), “Just a shot? Once a month? That’s great… for how long??” Immediately, the thundering dud of silence when I reply, “For the rest of her life….” It seems kinder to say that rather than, “Until it stops working and then we move on to a different treatment.” I am not in your shoes or Acacia’s …. or any of the others whom I’ve come to know and to love….. but I’m acutely aware of everything and sitting on the sidelines almost 6 years post chemo, early stage NED, seeing this happen to my mom either 25 years post treatment if it’s a recurrence of node involved BC#1 or 5 1/2 year post treatment if it’s a recurrence of very early stage BC#2 scares the shit out of me. I’m afraid for what may lie ahead for her and I can’t help but look over my own shoulder. It’s something I think most early stagers do at times.

    In The Moment. As in staying there….. May have to be the title of a book or something. What can I say to you, my friend….. I’m here.. Got your back (and pouring the scotch, too… or vodka as needed)

    xoxox

    AND, I bought my daughter some kick ass multi-purple shaded yarn. Her favorite color…. Now for the knitting needles which she will have to do with my mom. They can knit together.

    • Scorchy says:

      The other day I was talking with an old friend and she mentioned that she read the post. Talk about misreading, she thought it would be 2.5-3 years to be cured!

      It’s a hell of a thing, huh? Right now I need to de-Christmas and feeling as I do right now it’s going painfully slow. I should be finished around July 4.

      • I’ll bring the fireworks…. I de-christmased very easily. A tree with lights that I kicked out the patio door after I carefully removed my lovely twinkle lights and my new candy cane lights. My very best friend wanted to know “where are the balls?” which is a metaphor for both of our lives so we fell into a fit of giggles despite the fact that little, if anything, was funny at that particular moment. Laughing is highly underrated, even in what may seem to be the most inappropriate moments. So is the value of a good friend, one with whom you can lock eyes, know EXACTLY what the other is thinking, and collapse into belly laughs.

        YOU make me belly laugh when you aren’t bringing tears to my eyes with that sensitive side which I will help you keep under wraps…..

        Meantime…. I’m happy to come help you De-Christmas and I’ll drag you here to Re-Organize….

        Rest assured, there will be alcohol and it won’t be the kind on a cotton swab. And, I’ll smuggle in some fireworks, too…

        xoxox

        xoxox

  3. keithw says:

    My love is an educator too and stage four. She has been a guidance counselor for over thirty years in shitty little country towns where she is needed most. She is a misfit magnet: all the gay and lesbian kids, the nerds and geeks, those abused at home, and those that just never fit anywhere else are drawn to her to like iron filings to a magnet.

    Her “kids” are in some instances grandparents themselves now. Some are lawyers, surgeons, scientists, museum directors, master chefs, and social workers and teachers and guidance counselors themselves. They keep in touch to say the least – they love her.

    She is living life and doing that magic only she seems able to do for those kids that need it most.

    That graph peaks at around 30 months. Scorchy, that’s devastating to me, but like I have told you, I am here for insight, and you are kind of a guiding light on this dark ass trail.

    I know math, and stats in particular, but that doesn’t help the man beneath the learning. I am going to read that book and seek insights, what I might expect and how to be there in every way I can.

    Lady, you are like a tall straight shot of scotch with no ice and no damned soda – thank you Scorchy.

  4. Juneaubugg (aka Jennifer) says:

    I got nothing. No words. Just emotions, and perhaps a deeper perspective. I am struggling with being a survivor. Of fear of recurrence, and yet you are living with it, knowing it can’t be cut out of you like mine. The fears, the feelings… All so massive. Such big girl stuff. Makes me want to be blissfully ignorant again some days. I miss that life. I mourn that life. But I identify fully with you/and that author…

    And btw: I’m trying to learn how to crochet. Should I do knitting instead? I used to knit. My therapist knits, spins her own yarn, etc. just seems people are crocheting everywhere I am! Thoughts?

    • Scorchy says:

      Yes, I mourn that life too. But we move forward and we can’t look back. And we live life as best we can in spite of that beast. Living is reading, writing, sharing, petting a cat, thinking, laughing, or crying. Fuck cancer!

      Having done both, I prefer knitting. But I think it’s useful to know both because you may want to finish an item with a crocheted edge, repair a mistake in your knitting, or combine the two! I think there is far more variety in knitting (though crocheters May disagree). And once you use some snobby yarn, you will be hooked to the fiber arts in one way or another.

  5. Sara P says:

    Just want you to know you are loved, from afar, by a total stranger….moi. ((hugs)) Here’s to every fucking ounce of happiness you can muster…fuck the graph.

  6. dear scorchy,

    part of the art of living with mets is being able to slip in and out of differing realities – those in ones we wish to live that keep hope alive, bring our hearts to overfilling with gratitude for even the small things of our days, and help us deal with the “what ifs” – and the other realities (really?) that prognostications would impose upon us. fuck those. just keep a knittin’ and a writin’ – and book that trip to the english countryside!

    love, XOXO,

    karen, TC

  7. Katie says:

    I can’t imagine living with that knowledge. I think it’s incredible how open you are about it, too. To be honest, though, too, your diagnosis and prognosis cross my mind every time I read your blog.

    • Scorchy says:

      I’ll tell ya, Katie. You would be surprised at the strength you can tap when you face something like this. I’ve yet to meet someone with metastasis that is a useless ball of hopelessness. I’m sure folks like that are out there, but I haven’t met them yet. And, for the record, I don’t want you to EVER EVER know what it’s like. I’d rather you tap that strength for birthin’ babies! 🙂

      • Katie says:

        I’m thinking it’s probably one of those things that prior to being diagnosed, you’d think you wouldn’t be able to handle it, but once it becomes a reality being strong is really the only option you have when it’s literally your life on the line.
        And, you know, it’s funny, I was just thinking about pregnancy the other day, and I was like, “Gosh, if/when that happens, I’ll have so much material to write about…”
        Well you know, that, and nurturing human life and all that stuff.

      • Scorchy says:

        Sometimes the way I’ll get through an appointment or some challenge is to reframe it in my head and say, “How will I write this for the blog?” I don’t know if that is particularly healthy because I’m detaching myself, but it’s how I deal Sometimes.

        Yeah, I’m thinking if you do have little ones you may need a new blog: Sass and Balderdash and Diaper Rash!

  8. Tracy says:

    The three kinds of lies: lies, damned lies and statistics…. we aren’t numbers and there’s no such thing as average. We’re all so much more than that. Knit with the superfine yarn, bring the super long scarf over here to the English countryside and I’ll be waiting for you with a traditional cream tea 🙂

  9. Acacia says:

    Scorchy, I’m trying to ignore the numbers too (though I’m only making plans until the summer). I have an art project I’m working toward which requires me to learn basic horology to make a small brain automaton. It’s going to take a while to gain all the skills I’ll need to pull it off, so I’ll have to live long enough to finish it. At least that’s what I keep telling myself.

  10. Cancer certainly does not give a damn or any quarter, and yes it does smirk and flip us the bird. But we just have to flip it right back. And that’s what you do with every blog post, my dear. Well done.

  11. dglassme says:

    ** WARNING ** Dumb post – baby vent. It is a fact everyone will eventually die, it doesn’t mean you like yourself any less given your circumstance (of course you’d still like to aspire for all the possibilities present prior to your diagnoses), wanting to live is inherent in our being. We’ll all go, we don’t know when so nobody really gets to choose, instead we just live the piece we are afforded.

    It’s knowing something is there that has caught many before us, this time-date stamp with statistics and graphs leading us to believe we should plan for it, and we really still can’t. It’s the proximity of mortality that others don’t necessarily feel because they are not privy to any indicators which causes us to believe somehow we should be planning. Unfortunately, there is nothing instantaneous about the disease so it provides all kinds of signs then we begin to measure and graph those too in an effort to pin-point our precise being. OMG are we a statistically driven world…67% chance, 83% if you do these things, blah, blah, blah. Prognoses, errrr.

    • Scorchy says:

      It can be maddening, no doubt about it. That’s what got to me about the book. Sue and me even have similar writing styles, so that awareness of mortality was most keenly felt. It’s a royal pain in the ass!

  12. insahmity says:

    Another great post. Made me tear up and smile at the same time. Keep writing.

  13. Susan says:

    Scorchy, it’s really hard to balance all that is going on in your thoughts. I respect your honesty while I hope you are to the far right of the bell curve. Meanwhile all I can do is tell you how much I care and send you all of the hugs I can. I hope they help. XoXoXo-Susan

  14. Caroline says:

    Ignore the numbers.

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