504158EF91EAA8A27A35DB2FC810D5BC

Ten Years After the Mast(ectomy)

The literature nerds among us (and you know who you are) might recognize that I am making a vague play on the 19th century memoir Two Years Before the Mast by Richard Henry Dana Jr., which was about the hard lot and miserable treatment suffered by the common sailor in the early 1800s. While Dana intended his book to be a sort of exposé, it was widely received as the gripping tale of a sea voyage.

I feel something like similar to that dichotomy in looking back on the last decade. In just two weeks, on St. Valentine’s Day 2014, I will mark the tenth anniversary of my mastectomy. (I recall that day in this post, and my friend Aliza talks about it from her point of view here.)

My initial diagnosis was “mostly DCIS (ductal carcinoma in situ) with some IDC (invasive ductal carcinoma)” at Stage IIb or IIIa. It was vague and I didn’t ask for more precision. I was stunned. I was unable to process and evaluate data and situations. I didn’t ask many questions. I took a lot of notes and I did what I was told.

Within a year I was diagnosed at Stage IV. I don’t know if they missed the metastasis at first or if it somehow developed during the chemo and radiation and hormonal treatment that took up most of that first year. It doesn’t really matter, I guess.

The predicted life expectancy after my Stage IV diagnosis was two or three years. I’m starting my eleventh year. Just as Two Years Before the Mast was both an exposé and an adventure story, this decade of survival has been both wonderful and awful.

The wonderful part is pretty obvious, and maybe the awful part is, too. I didn’t expect to live this long. I wasn’t yet fifty years old when I was diagnosed; if I’m still alive next year, I’ll turn sixty. I didn’t do anything special. I didn’t go on a special diet or take supplements or meditate more than usual or pray more than usual. (I admit that my life includes somewhat more time in prayer and meditation than most people, though.) I didn’t really change my lifestyle at all, except for the gradually increasing limitations imposed by the illness and the side effects of treatment.

I’m tired now. The last couple of years—especially the last year—have been tough. The bone mets has progressed more than it did in the several previous years. The pain increased and increased some more and then increased again. I’ve started taking narcotics, which was a very hard decision for me to make. I’ve had to take antidepressants and anti-anxiety drugs and sleeping pills. I am experiencing far greater fatigue than I ever have, even more than during chemo with AC-Taxol protocol at the very beginning.

I’m tired. I’m not tired of living – far from it! I love life and I love the physical, intellectual and emotional pleasures of life. But I’m tired. My body is fatigued and my spirit… my spirit feels like Bilbo Baggins: “… thin, sort of stretched, like butter scraped over too much bread.”

How do I account for my ten years of survival with metastatic breast cancer? I don’t know. I’m a religious woman, so I just attribute it to those things that God knows and we don’t. I’m also an intellectual woman, so I attribute it some genetic or environmental factor that has yet to be identified. I’m also a philosophical woman, so I say that sometimes things just happen. I don’t know why I got breast cancer, and I don’t know why it hasn’t killed me yet.

48 Responses

  1. Diane says:

    Loving life with you. ~D

  2. A very succinct and poignant post. I also like your new site!

  3. Shari Larsen says:

    Great blog; I can relate to so much of that. I had the 10 year anniversary of my bilateral mastectomy last year, in May. I went a few years longer though before I became metastatic; that was in April 2007.
    I haven’t really done anything special either. I’ve had to start accepting over the past few years more and more limitations, and I’m also dealing with a lot of pain and fatigue.

    I was 39 when I was first diagnosed, and I turned 50 last fall.

    (By the way, I am Shari from our Facebook group.)

  4. Now that I have figured out how to add your new site to my feeder (I am still missing Google Reader), I won’t miss a post.

    Wishing you another eleven years. May you never tire of living.

    ~Kate

  5. Oh my dear, I am so sorry about the tiredness but I am so grateful that you are here and that you continue to write, to educate and to inform us. Your new blog looks fantastic – it feels like a fresh start. Here’s to hope xxxx

  6. Maxine D says:

    Hi Knot – so good to see you back – I have missed you and your posts. I love your use of language, and the way you challenge me to think (and to continue to pray for you).
    Sorry to hear that the tiredness and pain are becoming an overwhelming part of your journey :-(.
    Blessings and prayers
    Maxine

  7. Joanne says:

    Nice post, happy that you have ten past…hope you have 10 more!

  8. dear TK

    so very glad you are back – I’ve missed you. lovely to hear you are still loving life, still eager to write and share and enlighten us with your eloquent insight.

    your new site is beautiful in it’s simplicity – love the color of that leaf, the verdant shade of spring green. we here is the northeast US, need a peek of anything resembling spring!

    much love and light,

    Karen xoxo

    • Knot Telling says:

      The poor Northeast US! I’ve been reading about it, wondering how that kind of weather is compatible with human life!

      Thank you for your kind words. I didn’t design the site myself, but I am very pleased with it. I’m just tinkering and tweeking details now.

  9. Paula says:

    You are amazing Knot! I love the way you write. I am not a writer, but I love to read. Your blog is just so honest and I appreciate you sharing your journey with me. I don’t understand why these things happen but I’ve been told we will understand them when we get to heaven. If you get there before I do, could you send me some answers? In the mean time, just remember HIS eye is on the sparrow, so I know HE watches over you!

    • Knot Telling says:

      That is so sweet, Paula! Thank you.

      Everyone can write, you know. Just talk with a pencil or a keyboard.

  10. Maria Ratliff says:

    KT

    Ditto what Paula said;)

    Like your new site:)

    Keep fighting! God strengthens you…draw from Him.

    M

  11. Bill says:

    Thanks, TK, for working so hard to make this new blog, and now for enriching us all with your clear, sincere yet concise thoughts and feelings.

    Reading elsewhere about your renewed bread making also delights me–making me remember my grandmother’s weekly bread making when I was a little kid and how just the smell of it enveloped the house and all of us in life and love!

    Big hugs, Bill

    • Knot Telling says:

      Most of the hard work on the blog was done for me, Bill; I’m just tweaking now. I’m glad you’re enjoying it.

      Yes, there is something wonderful about bread making. I’m so glad to be able to have the technology (a bread machine) that lets me do it even now!

  12. Marcia says:

    Glad to see your new home and fortunate to have access to your words! Hoping for many many more years 🙂

    Marcia

  13. C

    As always, succinct, honest, real.

    You do not sugarcoat, and neither will I.

    I hope you live as long as you and the good Lord work out between you. I know you talk to Him daily, and you have taught me that He watches out for all of us even when we tend to rebuff His ministrations.

    That may be one more year, or it may be ten more. I don’t know. I just know that I hope you’re happy, that you wil enjoy all that life obviously still has to offer you in spite of this thing called cancer.

    A lot of people love you, and that will remain so for the rest of your earthly life and beyond.

    Peace.

    G

  14. Beth Gainer says:

    Knot,

    I am soooo glad you are still alive. I’m sorry you have to go through all this cancer crap. It stinks. I do love that you have been alive all these years; it’s hard to know why people defy the odds, but I’m glad you have.

    xoxo
    Beth

    • Knot Telling says:

      I guess that, at least for folks like me that don’t have the gene mutation, how we get is a mystery and survival rates seem to be a mystery, too.

      Thank you for being so kind and encouraging, Beth.

  15. You know that I love you, dear and I can’t imagine not having met you. Marie is right that despite your fatigue you continue to see things anew. You have a powerful spirit and although your modesty may preclude you from accepting this compliment with ease, you are perhaps the strongest person I have ever known.

    None of us knows how long we have or what the quality of our days will be on this Earth. I am happy for the gifts you bring today and for what you will continue to bring others with your writings and spirit long after all of us are gone.

    Xoxoxox

    • Knot Telling says:

      Yeah, yeah, yeah… strong shmong… 😉

      Thanks, Elizabeth. You are a wonderful friend and an inspiration.

  16. Catherine says:

    Sometimes I don’t know what to say when I read a blog post, but still want to say something. So here it is – I hear you, and I feel it as you write. I’m so sorry for the pain and the drugs. I hope the wonderful is continues to be wonderful, and am glad to be reading alongside your sharing.

    By the way, what a nice layout you have! Sometimes a fresh look is such a nice change.

    • Knot Telling says:

      Catherine, if you hear me and feel it I can’t ask for anything more. Thank you very much.

      I love the layout, too. I didn’t design it, but I’m delighted with it!

  17. Susan Zager says:

    KT what a beautiful post. I am sorry it’s been such a tough year and about the pain, but I am so grateful that you are here. I love the new format. You write so well. Thank you! Hugs and xoxo – Susan

  18. Well written KT. I hope I have the privilege of knowing you for some time to come as long as your pain is bearable and your mind is sound.

  19. I hate cancer and all that you’ve had to deal with since your diagnosis. I’m sorry about your fatigue and pain worsening of late. I’m so grateful you’re here and blogging about your truths. Thank you.

    The new site looks great!

  20. Elizabeth J. says:

    KT Your writing is so expressive. It gives to courage to those of us at the beginning of this journey. I am thankful that you do not “preach” this or that has kept me alive and simply allow for it to be in the hands of God, as it should be. You simply share what is.
    So sorry your fatigue and pain is worsening. When you still desire to do, and see, and experience life, and your body just does not let you, that has to be so frustrating. And I hate pain drugs after surgery, so I feel so bad you have to be on them all the time. I am just at the beginning (mets 2013)and I wonder how you do it. Yet, you continue to meet each day with quiet steady courage.
    I read or heard somewhere that we live as long as God has something more for us to do. Perhaps that is true. Yesterday, for the first time, I did not call my brother, send a card, tease that his birthday was Groundhog’s Day, for he has gone on. While I was in the middle of trying to survive cancer, one day he simply died – sudden heart attack. Yet, I am still here. There is no logic I can see. Yet, it is what it is. His purpose was apparently done, mine is not.
    I pray that you shall have peace and comfort, and remember, you are very clearly fulfilling a purpose. Your eloquence speaks for so many.

    • Knot Telling says:

      That is so painful. I am so sorry for the loss of your brother!

      Thank you for your kind words. We are all here for each other.

  21. My world is better with you in it… I enjoyed reading that you are not tired of living and while I can’t understand your 10 year fatigue yet, I can relate a little. Loving life too… and loving you. xox

  22. Gail says:

    I’m happy to find a fellow 10 yrs + survivor. I totally relate. Could have written much the same thing. Continually accepting more ‘losses’ is tiring too. Take care!

    • Knot Telling says:

      Nice to meet you, Gail. Yes, it is a very mixed blessing! Thanks for commenting. Hope we’ll see you here again.

  23. Knot Telling says:

    Thank you so much for kind words and the link!

  1. 2 February, 2014

    […] wonderfully fresh new look for the Telling Knots blog, even though the writer herself is feeling tired and exhausted , there is something about her new […]

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