Today’s post is a piece written in December 2010 by fellow blogger Rachel at The Cancer Culture Chronicles. Rachel is 41 and living her life dealing with metastatic breast cancer, having been first diagnosed seven years ago. The mascot for her blog is her lovely dog, pictured above. I love Rachel’s writing, she is snarky and opinionated; and she’s become my closest cyber friend. You’ll be hearing more about her and our friendship on my blog.
This piece is a powerful reminder that breast cancer ‘survivorship’ is not guaranteed to any of us following diagnosis. And Rachel’s words continue to teach us about the reality of metastatic disease – a subject that is often not mentioned in breast cancer culture. The US based independent group MBCN (Metastatic Breast Cancer Network) has a list of 13 facts everyone should know about metastatic disease. And I think the most shocking one is this:
Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)
That’s the truth about metastatic disease. This Thursday, the 13th October 2011, is Metastatic Breast Cancer awareness day, and I’d like to ask you to share this link to the list of facts about MBC. The MBCN also has a list of suggestions of other things you can do to to increase awareness.
Here’s Rachel’s post.
“In many respects, the experience of breast cancer feels like a well-trodden path walked by so many before and so many more, in ever-increasing numbers. The culture of the breast cancer experience tells us that on this path there are significant milestones, all of which bring their own challenges and emotions, but for which the ultimate prize is a life free and clear of breast cancer.
And so we wearily walk from “Diagnosis”, through “Treatment”, to “Recovery”, to “Survivorship and a Life After Breast Cancer”. And although getting to each of these milestones seems impossible at times, the culture tells us that if we muster all of our womanly strength and courage to keep bravely fighting, we will get through this and we will have reason to celebrate when breast cancer finally feels like a distant memory. And, fortunately, for many, this is exactly how the experience plays out.
But what about those of us who are living with metastatic breast cancer?
I embarked on the well-trodden path in 2004 at the age of thirty-three. After umpteen surgeries, chemotherapy, radiation and other treatments, by the end of 2005, I was declared cancer-free and finally felt like I was moving forward. I went back to work, resumed my life and really thought breast cancer was becoming that distant memory. It certainly seemed like a good time to celebrate. I embraced my role as a proud and victorious survivor. I was an advocate for the cause, I raised funds for breast cancer research, I founded a support group at work. I was doing all of these things in gratitude for the life I had been given back.
Fast forward to 2007 with a recurrence then remission, to another recurrence in 2009, and all of a sudden I found myself transformed from victorious breast cancer survivor to a woman with Stage IV breast cancer. I felt angry that the disease had come back despite everything I had gone through and I felt cheated by a breast cancer movement that seemed to have no place for me. What exactly had I survived? Where was my cure? Why did I no longer feel part of a sisterhood of shared experience? I had let everybody down. I had failed to reach the holy grail of milestones – that life after breast cancer.
Living with metastatic breast cancer is a strange and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about. There is no definite end to treatment, unless it simply stops working, in which case you move onto the next option. If you still have options. Each passing year, instead of feeling like a cause for celebration, feels like another year wasted to breast cancer. Some people might say, but aren’t you just grateful to be alive? And the answer to that is yes, but it’s not that simple. Because the unspoken part to that question is for how much longer? Every scan we wonder, is this the one where the cancer shows its hand? A “good” scan is one where the cancer doesn’t grow. Too much. And every three months we steel ourselves against the fear of what new horrors the scans might reveal. Sometimes it feels like we barely have time to take a breath between fearful takes.
Someone recently asked me if I ever get moments of pure, joyous, freedom of thought. The honest answer to that is rarely. When you feel like the disease is consuming you, no matter what you do, and you can’t remember a life before breast cancer, it’s very difficult to think of anything without it being tainted by breast cancer in some way. Let’s go on a vacation. If we can fit it in around treatment. It’s time for dinner. It’s time to take my pills. Let’s go for a walk. I’m too tired. I can’t wear that dress because you can see my port and scars. I can’t sit in the sun because the chemo makes my skin burn. Will I be able to keep tending my garden? Will I see my niece and nephews grow up? Will my beloved and I get to grow old together? Why me? Why me? Why me? It just never ends.
So how do I cope? For me, it’s writing. I’m angry and frustrated and I like to shout to the universe. I think I’ve earned the right. I’m also a keen observer of the world around me, and I write about the way I see it. It’s not for everybody and that’s okay with me, but it’s the way that I cope with a situation that is so uncertain, so uncontrollable and so completely insane, that it seems like a miracle that my brain and voice still appear to be intact, despite it all.”