Jinxed

I have another lytic lesion in my sacrum.  When I saw the picture from my routine PET/CT it looked like the Eye of Mordor.  The circle of the body was bright orange and there on the left, on the sacrum, bright white.  Okay, maybe it looked like the Crossed Eye of Mordor–which would say a lot about my twisted evil cancer adventure.

Only two weeks ago I was strutting around like a happy peacock telling people that I had not felt this good since before I was diagnosed.  And it was true!  Oh sure, I still used the cane because my back would get tired and I needed support, but I felt great!  My radiation oncologist told me that having so much fatigue in excess of six to eight weeks of treatment could not be attributed to radiation–not that long.  Then I recalled that I stopped taking Letrozole in mid-December, a month later I began to feel improvement in my hands and joints and, it seems, energy.  The drug was brutal and I am so glad that it is no longer part of my drug arsenal.  In comparison, Exemestane seems to be much gentler on my body.

Now it’s back to two hours of MRI imaging, little ink dots (one can hardly call them tattoos), and that bloody Varian.  Well, at least I know what to expect.  But this is all short term stuff and the news was not all bad: my primary breast tumor has less uptake of the tracer, everything is either better or stable–except for my lesion.  And since everything else is responding so well, it may be that my little lesion is an outlier–a tumor that does not respond to my current treatment because its characteristics are different.  Little bastard.

biopsy

Clearly no one informed me that when you have cancer you NEVER walk around like a peacock and tell people you feel better than you have in years.  Apparently cancer is hypersensitive to the jinx.

But, then again, no one ever talks about metastatic breast cancer in the way that they talk about everything else.  And by “they” I’m talking Komen.  It seems that unless it’s a mammogram, BRCA 1/2 previvors, survivors, and walks for the cure, Komen has no interest.

The Kohl’s/Komen #talkpink campaign was a real exercise in hubris.  First, they co-opted METAvivor’s 2012 Elephant in the Pink Room campaign. METAvivor is an organization that raises money for metastatic research–the very thing that Komen so consistently ignores. But, second, as they pursued their #talkpink awareness they did it on the backs of the 30%–the men and women with metastatic disease.

They did it on my back.

Were it not for metastatic disease, the narrative I told about my lesion would not need to be told.  Heck, I wouldn’t even have a blog. Early detection and pink awareness aren’t going to cure me.  I go to the Komen web page and I see a call for nomination for a 2014 “bat girl,” a link to ShopKomen, another link to Make Every Day Pink (TM)–yes, that phrase is trademarked.  On Komen’s advocacy page there is not one reference to metastatic disease. Not one.  There is a link to help you find a Race for the Cure ®.  But why go on?  There is nothing here that speaks to my disease in a way that shows that Komen is pro-actively lobbying on my behalf in any way.   Indeed, to find information on any woman with metastatic disease one must click on the drop down menu, choose “Metastatic Breast Cancer,” and there–buried at the very bottom of the page–is a list of four or five women they have chosen to represent metastatic disease.

All this is to say that I have decided to OCCUPY @SusanGKomen and #Komen.  I am not lobbing any ad-hominem attacks, but I am going to use it to shame them.  And I will use this to educate others.  If Komen thinks they can walk on my back after co-opting the property of an organization whose only purpose is to try to help me, I won’t be silent.

It never bothers me that when I take a stand against injustice that I may be one of millions; one candle in the darkness.  Over time more candles come and the landscape gets brighter. My purpose is not to “take down” Komen–that would be ridiculous.  I want to inform. I want to educate.  And I want to tell Komen that they just can’t walk over my back without being called out and held accountable.  And I will do it until I no longer can.  I’m in it for the long haul.  It is Komen’s turn to be jinxed.

My cause is small.  It is humble.  But “you must be the change you want to see in the world.” Mahatma Ghandi knew something about taking a stand against injustice.

Please, take a candle. I hope you will stand with me.

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30 Responses to Jinxed

  1. bethgainer says:

    Scorchy, you hit the nail on the head. First of all, I’m so sorry about that damned lesion. Secondly, Komen has really done the world a disservice by talking up the pink and not really addressing metastatic disease. People like you have educated me, and I stand with you.

    I wrote about the Kohl’s/Komen debacle in my recent post. http://bethgainer.com/kohls-cash-rich-ethics-poor/. I’m fed up with the whole pinking up and thievery going on.

    • Scorchy says:

      I read your post and loved it. We’re on the front lines always. There is no break. And you never know when it’s going to make an aggressive turn. And all the while Komen is out there bullying the community and most recently setting their sights on METAvivor.

      We stand together! Love you, Beth!

  2. Brandie says:

    Standing with you.
    And thinking of you.
    And feeling a lot of anger towards Kohls and Komen and glad wonderful people like you are there to speak and speak loudly about all of this.
    xoxo

  3. Knot Telling says:

    You go, girl! Let’s all poke a finger in the Crossed Eye of Mordor!

  4. Scott MacKenzie says:

    Of course I stand with you. And we’ll be standing together on July 16 too. Transportation included. Let me know how I can help. In. any. way.

  5. I love the entries you’ve made on #talkpink. Even though there is no Kohl’s or Komen in my part of Canada, I still find me and my mets bent out of shape over the whole thing. Thanks for your inspiration!

    • Scorchy says:

      Thanks, Jordana. Your phrase “me and my mets bent out of shape.” Maybe I should name the mets–become friends. You know the adage–keep your friends close and your enemies closer! :) xoxo

  6. I stand with you dear Scorchy. You have done so much to educate me about something I was woefully ignorant of

  7. Thank you for this post. I’m standing with you. I’m appalled that some 45 years after my mother’s radical mastectomy, there has been zip, zero, zilch progress towards a cure or even lowered incidence of the disease. Please let me know how #occupythecure can help #occupyKomen!

  8. XOXO

    I’m sorry that news soured your surge in energy … which I know could never take away from your beautiful flame that burns bright for all who are in the trenches of this wretched disease. I admire you and thank you SO much for your valuable voice in this community. You are love and light to many!

    Nicole

  9. Susan says:

    I am so angry at that stupid eye of the monster mother fleckin lesion but I don’t think that it has the right to take away from your happiness the days that you were feeling great. Fricjkin mets is so tricky… & Frustrating..And I am with you all the way with OCCUPY #KOMEN. I am sick that that they got a million dollars from Kohl’s (who got 5 million according to Gayle’s figures) with their stolen campaign from METAvivor. I hope the lawyers (law firm of Carlton Fields Jorden Burt, P.A) that METAvivor got pro bono get Komen big time. Meanwhile even though I’m late today getting on Twitter to the OCCUPY #KOMEN bastards I won’t stop. Hugs to you Scorchy…xoxo – Susan

  10. Thank you for sharing. The information your provide has been informative and eye-opening as it relates to the failure by Kommen to properly address, educate and advocate for those who have been diagnosed with metastatic breast cancer. A six-year breast cancer survivor, treated by chemo and radiation, the cancer has not metastasized. But thankful to recent information acquired through reading your blog along with others relating to breast cancer, after five years of believing my cancer was cured, I find there is a 30% chance of recurrence, metastatic, even with my diagnosed Stage 1 Cancer . I am grateful to you and the other breast cancer bloggers, I now know the importance of lifestyle changes and healthy living to combat recurrence. I applaud you for your advocacy.

    • Scorchy says:

      Seasonedsistah, you warmed my heart with your message. Thank you. Thank you for taking away that core message and for taking the time to comment. I am grateful for your support. xoxo

  11. maesprose says:

    You have such a wonderful way of phrasing things. Eye of Mordor – I could picture it! As for the candle – it’s lit.

  12. dear scorch,
    the candle is lit, and I am with you. love you, karen

  13. You know I’m in, Scorchy. As far as occupying, do you mean commenting on the Komen blog? I can do that.

    • Scorchy says:

      YEP. Or tweeting To @SusanGKomen with the hashing # Komen. Anytime you get that disgusted pink feeling? Well, that’s when you tweet.

      • I don’t have a Twitter account but I did post something yesterday in “Share your story” on their website. Part of my story was being surprised about the high rate of metastatic cancer and expressing my hope that funding priorities in their organization will shift. I’m hoping that they publish it.

        Interestingly, when I looked at their blog, I could not find a way to leave a comment.

  14. jude says:

    Shit, Scorchy. Shit.
    And be the change, yes. You rock. And I mean that, sincerely, from my heart.

  15. tw says:

    Crossed eye of Mordor – well #%€¥, that’s not what any of us hoped for. I don’t know why metastatic cancer is so poorly represented other than thinking its because there’s no happily ever after and much of humanity still can’t face that reality. It doesn’t sit well with pink (but then cancer never did, it’s just the media and the marketeers who think it does). It’s a subject close to my heart for many reasons so add this candle and before you know it well have a roaring fire.

  16. Caroline says:

    I jinxed myself recently as well. In mid-February I told my therapist everything was calm in my life and nothing was going wrong. As I left that appointment my father left me a message that my mother was back in the ER and then he got sick and his chemo got delayed and my health has more twists and turns. I go back to my therapist next week and I hope that ends the jinx.

    Life with cancer is never as good as we think. Things are always lurking in the background. But think how happy you were when you were telling everyone you were doing so well. Hang in there.

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