The Sound of Silence and Why I Do What I Do

I was recently in a room of about 20 breast cancer survivors/thrivers/veterans. As we moved through the room with introductions each woman announced how many years it had been since her diagnosis, almost invariably in terms of how many years she was “cancer free.” 8 years, 12 years, 6 months, 5 years, over 20 years… Woman after woman was met with applause.

When it was my turn I shared that I was initially diagnosed in 2002. (P.S. That would give me 11 years of survivorship and put me comfortably in the upper half of longevity.) I went on to say I’ve had metastatic disease for nearly two years.

Not a sound, save the weight of my words dropping to the ground with a thud. No applause. No support.

I get it – no one claps for metastatic disease, it’s nothing to celebrate.

But the message, as I sat there listening to each of these women being rewarded for their victories, was stunning in its silence: I HAD FAILED.

This isn’t new to me. Few people know what to say or how to respond to the message that we all dread; especially those who know full well it could be them next. But it is particularly jarring in a room filled with breast cancer advocates who, right or wrong, I expect to know better.

MetaVivor_FINALNEW-Logo-av2-2

Enter METAvivor.

With all the breast cancer organizations out there – some good, some not so good, some just not my thing – METAvivor is where I have found a home.

If you’re not familiar with METAvivor, please indulge me:

Founded in 2009 by the indomitable CJ (Dian) Corneliussen-James and others, METAvivor morphed from an Annapolis-based support group for women who were living with metastatic breast cancer (MBC) and weren’t quite comfortable in “regular” support groups – a refrain I hear all too often. Despite the devastating loss that accompanies working metastatic cancer patients, and very much in their memories, METAvivor grew into a critical voice in metastatic breast cancer.

CJ and the other founding women had set their sights much higher than a local support group, and have established a mets-focused Reserach Grant program that directs 100% (yes, 100%) of donations to scientific research targeting metastatic breast cancer through a peer review process. Often these grants help scientists do foundational work needed to secure funding through more traditional mechanisms.

Our next growth spurt is to bring METAvivor across the country. I am delighted and honored, and a little overwhelmed, to have been asked to serve as the director of METAvivor’s Ambassador Program, our effort to create regional teams to spread the word, raising both awareness and funds on the local level. I hope to bring my many years of non-profit and community organization experience, along with my commitment to changing the face of breast cancer to make a deep and lasting difference.

I am already working with a powerhouse team of women, and I invite your participation, no matter where in the country you reside. From local efforts to shine METAvivor colors on buildings around the country during October, to a cross-country awareness run kicking off in February, to local interviews and small fundraising efforts, there is plenty to do! I hope you’ll join me…

If you’d like to learn more about METAvivor, please visit: http://www.metavivor.org

You can make a donation at: http://www.metavivor.org/Donate_Online.html

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41 Comments (+add yours?)

  1. Scorchy
    Sep 09, 2013 @ 13:39:01

    Knowing what a fire cracker you are, did you admonish the room? I would have blown fucking gasket!

    Reply

    • The Accidental Amazon
      Sep 09, 2013 @ 13:41:23

      Seriously, Scorchy. There are some home truths, like that inconventient 30% stat, that get ignored by far too many.

      Reply

  2. The Accidental Amazon
    Sep 09, 2013 @ 13:39:18

    Brilliant!!! You are the perfect choice for this, Lori. I wish I had the wherewithal to do more for METAvivor, but at least I can lend my admin geekitude to keep the blog afloat. And I get to help one-on-one in my job. Rock on, my friend.

    Reply

  3. rannpx3
    Sep 09, 2013 @ 13:44:01

    This post made my insides groan. I never liked support groups – part of it was them, part of it was me, and well the other part is why support groups exist in the first place–our calamity.

    You must be one strong woman Lori. I salute you, and congrats on being named Nat’l Directing Ambassador to METAvizor (hope I got that right!) you’ll do great.
    I can see your point–maybe that hard moment was meant to kindle or rekindle the fire for more mets awareness.
    That was a great & informative post.
    You have my support, again Congrats!
    ~Rann

    Reply

  4. eak13
    Sep 09, 2013 @ 13:51:16

    One of the reasons I never went to support groups. When we are judged by the very ones who should be the most supportive.
    I would have been walked out.. A…….x

    Reply

  5. The Savvy Sister
    Sep 09, 2013 @ 13:54:54

    Congrats! You will serve well I’m sure. I share that 30% stat everywhere I can, by the way. Love Metavivor and I will continue to support them!

    Reply

  6. eak13
    Sep 09, 2013 @ 14:02:16

    Oh my goodness I was so ticked off about this I forgot to Congratulate you on your new position..
    Wonderful news!!

    Reply

  7. Lori
    Sep 09, 2013 @ 14:02:52

    Thank you ALL. I’m so very excited to be involved with METAvivor and deeply impressed by the work they (we) do!

    Point of information: this wasn’t a support group – this was an ADVOCACY group!

    Reply

  8. AnneMarie
    Sep 09, 2013 @ 14:06:50

    What Scorchy said. Ten times. Or ten million times….

    As for METAvivor, you already know where I stand and as the media awareness person for the Sea to Sea run, I will be calling on everyone to help me get the word out in every outlet possible!!!!

    xoxoxo

    Reply

  9. Terry Maurer
    Sep 09, 2013 @ 14:13:14

    Wow, Lori,
    I’m not even sure where to start with this…I guess an apology to begin, as I was one of the 20 in that room. And, I apologize for not only…not applauding, but for not noticing that there was no applause.

    I think you are right when you comment…

    “Few people know what to say or how to respond to the message that we all dread; especially those who know full well it could be them next. But it is particularly jarring in a room filled with breast cancer advocates who, right or wrong, I expect to know better.”

    But I can tell you, from the bottom of my heart, I would never attribute the words “FAILED” to you…anymore than I think of my own state of being ‘cancer free’ as a personal success. I feel lucky, but not successful.

    I replay in my head how it could have played differently when you announced you were metastatic and if applause would have been a fitting response…and somehow that doesn’t seem right either. So, I’m not sure what the right response is…and though it seems I should know, I don’t…

    But I do applaud you.
    I applaud you for fighting through this disease, everyday. I applaud you for reaching out to help others who are walking the same path. I applaud your 11 years of survivorship. And I applaud you for being the beautiful soul that you are!

    All my best to you Lori, and all that you do!

    Terry Maurer
    Act After Cancer Treatment
    http://www.actaftercancertreatment.com

    Reply

    • Lori
      Sep 09, 2013 @ 14:17:00

      Oh Terry – NO APOLOGY NECESSARY! It was more something that I realized in retrospect…it just happened and I know beyond any doubt that no harm was intended by anyone. It simply was striking.

      AND we still need to have a conversation about METAvivor!!!

      Hope the rest of your stay was great. Let me know when you have time to catch up!

      XOX,
      Lori

      Reply

      • Lori
        Sep 09, 2013 @ 14:19:51

        P.S. I’m not sure what the “right” response is either. But it does beg the question that if we are just lucky to be NED through no work of our own, does THAT deserve applause? Of course we all do so instinctively, and perhaps in hopes that we too can achieve these milestones as as measured in years. Rest assured, there are no answers!

      • Terry Maurer
        Sep 09, 2013 @ 15:02:41

        I think it is more of an instinctive reaction to applaud in the first place. I have to say I don’t feel all that comfortable with getting the applause for something I’d rather not be stating to begin with…but, I’d be put off, as you were, to NOT get it when everyone else did.

        I think it feels wrong to applaud mets…just plain and simple. Period. But you and everyone fighting mets deserve the recognition that you fight this on a daily basis…more so than the 8, 10 and 20 year survivor. You are DOING the work daily, you are succeeding daily, you are living this battle daily!

        Again, I applaud you…and I love what you do and what you are bringing to table!

        XO right back to you!

        Terry

  10. Facing Cancer Together
    Sep 09, 2013 @ 14:22:47

    Congratulations on your new role in METAvivor. I need to learn more – some of my favourite folks online are part of METAvivor. And as for that silence . . . geez. There’ a long way to go. I’m sorry we weren’t there to give you a rousing round of applause. ~Catherine

    Reply

    • Lori
      Sep 09, 2013 @ 20:47:53

      Thank you, Catherine! I’m so excited to have another crucial place to direct my efforts! As for the applause – I think it’s fair to wait until I do something impressive! For now it’s my onc who deserves much of the credit!

      Reply

  11. Susan
    Sep 09, 2013 @ 15:02:49

    Lori I am so glad that you are the director of METAvivor’s Ambassador Program. I support you, Metavivor and especially everyone living today with mets. I am doing what I can, but I wish I could do so much more.

    We also have to keep getting the word out and there has to be a big change in everyone’s understanding about this disease. Mets has got to get out of the closet. People have to wake up and know the truth about this disease – including and especially a room filled with people who have had the disease. WTF? It’s really upsetting.

    Luckily Metavivor is on the move. Thank you for all that you are doing and this very informative post.

    Reply

    • Susan
      Sep 09, 2013 @ 15:15:25

      I just looked back at what Terry wrote so I did not mean to go after the room of people. I was only responding to the importance that anyone living with mets deserves so much praise and there is much work ahead of us to get the message out as well as seeing the Metavivor Research Grant program grow so that we can keep seeing many more years of survivorship.

      Reply

  12. Sue Unruhe
    Sep 09, 2013 @ 16:25:26

    I am proud to be a friend of Doris Ann Price, a member of Metavivor and I have benefitted greatly from the wisdom she shares in her journey. When initially diagnosed, I was one who was uncomfortable meeting women with Stage IV disease. However, I have progressed and now believe those with metastatic disease should be the leaders of the breast cancer “movement.” From the time of diagnosis, you become a survivor, whether you become NED or not, whether you experience recurrence or not. I now embrace my metastatic sisters and make a point of welcoming and including them in any group I’m in. None of us knows how long we’ll be on top of this earth. I’d be very happy and proud to rock metavivor colors in pinktober. Of course, as an ovarian cancer survivor, it’s all about the teal right now.

    Reply

    • Lori
      Sep 09, 2013 @ 21:00:52

      While I have just recently gotten to know Doris Ann we are SO very lucky to have her one our team!! And I think your initial reaction is so very typical; I think mine was the same. But here we stand together!

      Reply

  13. NotDownOrOut
    Sep 09, 2013 @ 18:52:06

    I assume it’s okay, but will ask first. May I reblog? I’m happy to provide support.

    Reply

  14. Renn
    Sep 09, 2013 @ 19:06:32

    Lori, I can just imagine the silence in that conference room (or wherever it was). And I imagine what people were feeling but not saying was, “Holy S***, that could be ME.” For some reason, fear silences people. But we have to collectively not be afraid. We have to show support. Silence *never* equals support, IMHO. Silence SUCKS.

    Congrats on your position, and we gotta meet for coffee! 😉

    Reply

  15. Laurie
    Sep 09, 2013 @ 19:11:23

    “If we are just lucky to be NED through no work of our own, does THAT deserve applause?” – Exactly. Ever go to a breast cancer conference where they hand out beads to represent the number of years since diagnosis? There’s always a separate string of beads for mets – and I always feel like I might as well have a sign around my neck that says “I am your worst nightmare.” No one gets mets like those who live with it.

    Reply

    • Lori
      Sep 09, 2013 @ 21:15:11

      I’ve been to such a conference – and those where people stand up for the number of years they’ve survived. Our docs probably deserve SOME of the credit!

      Reply

      • Laurie
        Sep 10, 2013 @ 07:48:11

        And although I’m very grateful that I’m still alive and currently NED. It’s been 7 years + 8 months since my initial diagnosis and almost 7 years since I learned I have mets. I’m grateful for every day. But I don’t, for a second, feel that anyone who gets mets or who lives for a shorter time has failed.
        I am so glad that MetaVivor exists. Thanks for doing the work you do!
        This is a wonderful post. I’ve shared it on FB and Twitter.

    • Lori
      Sep 10, 2013 @ 08:48:14

      Or when they have everyone with mets stand, and then sit based on years NED? I am BEYOND overjoyed for each year each of us gets, but what’s the message when, in a room filled with a couple hundred people, when 2 people are standing with 20+ years of survival? I suppose many must find hope in it; I find sadness…

      However, I also find deep gratitude in knowing I’m not shouting out alone! I have the very best of company in this Cuckoo’s Nest! Thanks for sharing your insights!

      Reply

  16. karen sutherland
    Sep 09, 2013 @ 20:53:20

    dear lori,

    I am so glad you wrote this post that so demonstrably highlights the plight of the metastatic breast cancer people. and that it happened within a group of advocates – well that just speaks volumes. I wonder what conversation might evolve if those who were present were asked what they would do differently if they had it to do over again, after being presented the scenario from your viewpoint. I do think it would be one of expressing compassion, and perhaps being bewildered at what their response, or lack of, represented. maybe it could be a highly instructive session, one of taking on so many elements of what we talk about all the time – live long, you’re a warrior, recur, you fail. after all, even long-lived lives of disease stability are just as subject to recurrence at some point. it would be great if you could pull together one or two women who “get it”, and a great chance to provide a different kind of conversation that addresses metastatic breast cancer, and further, fuels the fire in bellies of those who will be on the front lines of bringing the truth to the forefront. the reality is, as anne marie stated in todays post: BREAST CANCER IS THE MOST OVERRATED SUCCESS STORY IN CANCERLAND. (note to anne marie – sorry if I didn’t quote quite accurately.) the point is not to take away from persons who have every right to be pleased with their remissions, but for all of us to step up to the plate and acknowledge WE NEED MORE – MORE INTERVENTIONS TO PREVENT AND.OR TREAT METS, AND THE RESEACH DOLLARS ALLOCATED FAIRLY.

    thank you lori – you will be a magnificent asset of advocacy for the METAvivor Ambassador Program. and for god’s sake, people, think of a more appropriate way to respond to introductions at these meeting!

    Reply

    • Lori
      Sep 09, 2013 @ 21:12:25

      Oh Karen, thanks SO much for your heartfelt response. This is SUCH a complicated issue – what matters is that we engage in the conversation. That’s how we ALL learn and grow. I do hope I can carry forward the voice of mets patients, but ALL of our voices must be heard! XOXO

      Reply

  17. Holly
    Sep 12, 2013 @ 05:45:25

    Did the facilitator do ANYTHING?? I would have stood up, thanked you for being present and giving everyone hope that even with metastatic disease we can thrive!! And then I would have crossed the room to give you a huge, warm embrace.

    Reply

    • Lori
      Sep 12, 2013 @ 06:29:38

      And I wish you had been there! It wasn’t really a facilitated group and full realization of the messaging really didn’t hit me until later. But I am grateful for the dialogue it has sparked here! And I’ll take that hug! Xox

      Reply

  18. Nancy's Point
    Sep 26, 2013 @ 15:06:58

    Gosh, Lori, I have no words. I know people are often paralyzed by fear, but still… the behavior in that room was pretty darn insensitive. I’m sort of tired of the excuses – you know the ones about the awkwardness about what to say or do. And at support groups no less. Come on people!
    Anyway, congrats on your new assignment. You will be terrific! Of that I have no doubt.

    Reply

  19. Carolyn Frayn
    Oct 05, 2013 @ 13:43:00

    Congratulations Lori, your energies are so very inspiring. As for silence and failure… I can’t believe that a group who had been through what most go through would let your words hit the floor. Shaking head. xox

    Reply

    • Lori
      Oct 05, 2013 @ 16:47:46

      I was surprised too! But as was discussed above, clapping didn’t seem appropriate either. Alas… I was at a meeting today for metastatic breast cancer patients, and once again the three 10+ year survivors were applauded. I am THRILLED for their survival; it’s what we all hope for. But the flip side is that in 10 years, all the patients in that room save three will likely be dead.

      ________________________________

      Reply

      • Carolyn Frayn
        Oct 06, 2013 @ 10:49:05

        I suppose it’s human conditioning that makes people applaud… even though it’s pretty freaking random, living 10 year plus with this disease. I am thrilled for them as well Lori, and like the rest of us, continually saddened for what we go thru in order to live one, two or ten.

      • Carolyn Frayn
        Oct 06, 2013 @ 12:45:51

        Thinking about your experiences more and more… and I apologize that I had not read Terri’s comments before I wrote.

        One group applauds survival, the other group applauds survival. Another tell of that gap, or void, between the pink side and the terminal side of the same freaking disease.

  20. Trackback: October 8: Things Not to Say – Part 1 | METAthriving

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