We Are Never ‘Done’ with Breast Cancer

Posted on: May 1st, 2013 by
13

Last week I and many others were bludgeoned with the news that Jody Schoger’s breast cancer had metastasized — after Jody had no evidence of disease for 15 years. Jody is one of the founders and co-moderators of the now-famous #BCSM chats, a breast cancer support tweetchat group that is more than just a group.

We are a family.

For information on #BCSM, see Jackie Fox’s excellent post here.

I haven’t recovered from Jody’s news yet. I’m not sure I ever will.

I’m not sure I even want to.

Truth is, we who have had cancer are not “done” with cancer. Ever.

Lately, I’ve been reflecting how my view of breast cancer has evolved over the years. When my chemotherapy and radiation treatments ended in 2001, I embraced the idea that I defeated cancer. I was still shell-shocked from diagnosis and treatment, but I believed I was tenacious enough and fierce enough to accomplish the deed.

So much so, that I participated in my first Susan G. Komen Race for the Cure only two months out of treatment. I walked it, but I reaped the same benefits as the runners. At the finish line people were handing out pink roses — without removing the thorns. A prickly situation for anyone with lymphedema. Oh, and I received a medal for being a survivor.

I had such a wonderful, empowering time that I decided to run the Susan G. Komen Race for the Cure the following year. And run it I did. I was a reminder to the world what victory looked like — and I’m not talking about my snail-like pace. I remember crossing the finish line to the crowds cheering for me because I was a survivor, identified by my pink tee shirt.

I also became a sound bite that day.

A newswoman with a microphone and cameraman stopped me after I crossed the finish line, all sweaty but glowing, to quickly interview me. I said then, “Just over a year ago, I was so sick from chemotherapy and radiation. Now I’m running in this race. It’s simply amazing.” I felt joy and camaraderie from this experience. I was being honest. That was my truth back then.

And my sound bite made the news that evening.

Around 2004-2005, I started writing an immense amount of poetry after a 20-year poetry-writing hiatus and the death of my good friend to metastatic breast cancer. Much of the poems expressed anger about the positive haze surrounding “the good cancer,” as many insensitive people call it, and about other breast-cancer-related issues I was royally pissed off about.

Then I got a medical scare in 2006 that led to a prophylactic double mastectomy.
And my world once again changed. Once again came apart.

Besides the scare and damage to my psyche each time I must go to a doctor, I know that my cancer from 12 years ago can metastasize. Twelve years doesn’t equal a cancer success story. Neither does 25 or 35 for that matter.

Jody’s situation is like all too many others’ breast cancer situations. It could happen to you. It could happen to me.

We in the breast cancer world are never “done” with breast cancer.

But I have been done with Komen for quite some time. I am disgusted by the pink ribbon and cause marketing taking precedence over funding for research, which saves lives. Komen’s event is called Race for the Cure. Well, the race is real, but where’s the cure?

Peggy Orenstein’s brilliant New York Times essay on breast cancer is a must-read. So is Gayle Sulik’s book Pink Ribbon Blues. These writings, as well as those of bloggers, such as Nancy Stordahl, further opened my eyes to the damage of the pink ribbon. Awareness means nothing. We are already aware, but without sufficient funding for research, breast cancer will continue to metastasize and will continue to steal lives.

I’ve changed my photo caption for my head shot from “survivor” to “thriver” to now “breast cancer self-advocate.” I no longer know what to call myself. I now know that I’m not cured, as my surgeon once told me. I’m not in remission, as so many people tell me.

I have no evidence of disease. Which is good enough — for now.

In the meantime, our community surrounds Jody with love and support.

But we know we are never “done” with breast cancer.

And breast cancer is never done with us.

Have your views on breast cancer changed over time?

What is the best way to ensure that research dollars are going to metastatic breast cancer?

Komen Medal


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13 Responses to We Are Never ‘Done’ with Breast Cancer

  1. Jody Schoger had this to say about that:

    Thanks so much for your thoughts, Beth. One of the weirdest aspects of the past few weeks to me has been in the position of bringing bad news all the way around. It is such a bummer.

    There’s an incredible amount to learn from my experience, too, I hope. I think it’s important to underscore that although any woman with cancer can have it recur not every woman will. We need better post-cancer screening methods – especially in ER+ cancers like mine. We need more tolerable anti-hormone regimens. There’s so much to do.

    I’m so glad you’re part of this conversation with us. Until I was diagnosed with breast cancer I thought pink was a beautiful color. When I see a cluster of azaeleas herer in March there are times I still do. But as far as the commercialization of a disease? That’s a kind of pink I can’t abide.

    hugs,
    Jody

    • Beth L. Gainer had this to say about that:

      Hi Jody. You are right about needing better post-cancer screening methods. It must have been very difficult to tell everyone the bad news. I’ve always appreciated your candor and refusal to sugar coat anything.

      I also was ER+.

      Thank you for commenting, Jody, and we are all behind you.

  2. Susan Zager had this to say about that:

    This is beautifully written Beth and we are all upset about Jody. And yes we are never “done” with breast cancer. Hugs and xoxoxo – Susan

    • Beth L. Gainer had this to say about that:

      Thank you, Susan. I think the cyberworld has sent many hugs over the past week. Take care….

  3. Nancy's Point had this to say about that:

    Beth,
    No, we are never done. I do not live in fear. I will not live in fear, but I do live in reality and part of that reality for me is accepting the fact that I will not ever be done. Like you, I was and still am stunned by Jody’s news – more proof for your point, as if we needed any. Thanks for the terrific post and for the link to my Huff Post piece. You’re so kind.

    • Beth L. Gainer had this to say about that:

      “I do not live in fear. I will not live in fear, but I do live in reality.” Excellent distinction, Nancy. I also do not live my entire life in fear. However, unfortunately those inner demons come up during the darnest times. I think it’s importance to live in reality and not go into panic overdrive, as so many of us are wont to do sometimes. Your Huff Post piece was excellent. My pleasure!

  4. Pingback: Tiptoeing Through Survivorship @ Nancy's Point

  5. Terri had this to say about that:

    Thank you for sharing this post and for continuing to raise awareness about the reality we all face. Beautifully written!

  6. Paul Blais had this to say about that:

    It is sobering to know that we are never done with cancer. I just found out last week that my cancer is back (http://paulblais.blogspot.com/2013/04/sunny-and-dark.html). This is not a fun journey.
    Thanks for sharing your thoughts.

    • Beth L. Gainer had this to say about that:

      Paul, I’m so sorry to hear that your cancer has returned. I will check out your post and leave a comment. No, the cancer journey is never fun.

      Thank you for reading my post and leaving a comment.

  7. mona had this to say about that:

    This is a wonderful pece. Your so right we are never done with cancer. every ache sends alarmbells smashing through our brains. It is so hard to explain to others what it is like to be a “suriver” I have never felt that I was or ever will be. If I had a euro fro every time someone has saif=d to me” your allrght now and did you get the all clear yet” i would be very rich.

    • Beth L. Gainer had this to say about that:

      Mona, I know about those aches and pains that shoot panic through mind and body. It is so very hard to explain to others, many of whom expect us to be moving on. We do move on, but once faced with such a life-altering illness, things are never the same.

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