363 Points Down

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

Sometimes women who have put treatment for early stage disease behind them demand that I believe that they understand; as if their own experience is otherwise “less than” – less authentic, or less powerful, or less worthy. Of what I do not know. Of course their own cancer journey is a powerful, life-altering, life-appreciating experience. I have no need or desire to compete. I stand ready to celebrate the death of every cancer cell, be it in their body or my own. But a diagnosis of mets is different.

Ironically there are days when I’m not sure I have street cred amongst the MBC crowd either. My cancer remains asymptomatic, and predominately detectable by tumor marker. My scans are stable, and if anything we seem to be reversing the course. Having watched my tumor marker rise precipitously for two years, from below a normal of 42 to a peak of 491, I have been comforted by its persistent drop since I resumed treatment in August. I have no pain, no neuropathy, no alopecia, no nausea. I am weathering my treatment as smoothly as anyone might.

Too smoothly, perhaps…while it appears on the outside that everything is just fine, it doesn’t always feel that way on the inside. And yet the pressure to “count my blessing” and “be positive” is enormous. Most days being positive comes easily. I am optimistic and confident that I will beat this back. But every now and again the gravity of having metastatic disease washes over me, and I have to dig deep to find those blessings. Some days I just need to be angry and sad and frightened. And I need it to be okay with the people around me.

If surviving an early-stage breast cancer diagnosis is a brush with death, then living with metastatic breast cancer is a dance with it. There will never again be a cancer-free day (which is not to say that there ever were, but sometimes I could act like it). Instead of an annual scan, I am forced to face my fears every four weeks and to wonder at night what it is like to die of breast cancer. Trying to live every day as if it’s your last, with appreciation for the gift that it is, and the taste of its brevity is, on one hand exhausting, and on the other the most exquisite gift.

As my tumor marker inches down, from 491 to 128, I am grateful for each of those 363 points it has dropped, even if none of us really knows that they mean. Markers measure response to treatment, and clearly treatment is working. What happens when I arrive at “normal” I do not yet know. I’ll keep you posted…

17 Comments (+add yours?)

  1. adenacb
    May 27, 2012 @ 18:58:11

    your words are so honest and so important. thank you. wishing you only health, healing, and peace.


  2. Marilyn
    May 27, 2012 @ 19:14:45

    Once again, I am touched by your honesty. You have put into words my feelings. I thank you for this. You are in my kindest thoughts and prayers.


  3. Laura Temkin
    May 27, 2012 @ 21:13:35

    You are so right about all of it, how scary it is, how overwhelming it feels, and yet how grateful it makes us each for everyday and the smallest of pleasures.


  4. Facing Cancer (@cancer2gether)
    May 28, 2012 @ 08:22:09

    Excellent post – your frankness of feeling displaced between two groups is appreciated. And you are right, each person has their own trial. There is no point in comparing. May your markers keep dropping down, down and down.


    • Lori
      May 29, 2012 @ 18:52:09

      Just as no two sunrises are alike despite how much they have in common, nor are any two journeys. I so appreciate your wishes!


  5. Jackie
    May 28, 2012 @ 13:10:42

    Great post. I am with you on this journey. Always.


  6. Holly
    May 28, 2012 @ 14:22:08

    oh – this makes me so sad and angry too! i reach my five years in September. i am thinking of you always and i am so grateful for your honest posts….


  7. chemobrainfog
    May 28, 2012 @ 18:20:32

    You have my emotions swirling in every direction. Thrilled that the markers continue to drop, angry over the two years you watched them climb, knowing you are tolerating the treatment without “incident,” and then your feelings about belonging. There is no “mets lite” group and there is no comparing. I don’t know what it is like to dance your dance. I only know how to be a friend. A forever and always friend….



  8. DrAttai
    May 28, 2012 @ 19:14:26

    So glad the numbers are going down, and so sorry that you are going through this. Here with you during the positive as well as the sad/angry/frightened times.


  9. The Accidental Amazon
    Jun 04, 2012 @ 14:57:09

    Lori, this post is amazing. It captures so much so well, so articulately. It just resonates, like a pebble in water, sending out waves. No, we are none of us supposed to be in a competition. And I don’t always feel fearless as a fearless friend, believe me. But I’m here, bearing witness.


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