The Well Trodden Path
UPDATE:
The following post was written by Rachel Moro Cheetham, a beloved member of the breast cancer blogging community. It is with great sadness that I update this with the news that Rachel passed away in February 2012. Her blog The Cancer Culture Chronicles enlightened and inspired many of us to think differently about breast cancer and she will be deeply missed by all of us who knew and loved her.
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The Well Trodden Path
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.
I can’t say enough about this post. So I will thank you. I will read this again. You have inspired me to work harder, much harder on behalf of women with metastatic disease.
I love you already.
Jody
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Beautiful. Just beautiful. How very generous for you to share this, and what a gift your honesty is.
xoxo,
Katie
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Beautifully written and searingly honest. Thanks to both of you for your writing x
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Incredibly moving – tears in my eyes reading this today.
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Should be read by every oncology nurse and doctor to truly understand what it is like to go through this!
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Stunning account of what it is like to walk this well trodden path. Wishing you peace and healing Anna as you journey this road xxx
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Humbling to read Anna’s story today
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Thank you all for taking the time to read my story, and for all your thoughtful comments. It simply reminds me of what a genuine and wonderful community exists out there in cyberspace.
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Anna, what a beautiful post. My thoughts are with you daily and I find your ability to write so eloquently about all this, simply stunning. Thank you for sharing.
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WOW, that was beautiful and honest and thank you so much for sharing it. I sometimes feel that I am in a bit of a no-man’s land (or should I say no-woman’s land?) in the breast cancer community. I was diagnosed 4 years ago, had surgeries, chemo, radiation, herceptin, was on tamoxifen declared disease-free and then 2 tears ago it had metastasized to one spot in one vertebra. So I think I would be considered a Stage IV survivor and am currently disease free again but I feel like at any moment, on the next scan or blood test, I’ll get the bad news.
Here is the line I love that you wrote about writing …”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. ” That so resonates with me, and I would add my psyche to the list of things miraculously still intact (well most of the time it’s intact:) )
Best of luck to you,
Debbie
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Anna,
This is one of the most powerfully moving posts I have read. I will have to come back and read it again. I am sorry you have had to go through all this and that at times you feel alone and forgotten. Remember this, those of us who follow your blog and count you as part of our “stocked pantry to ride out the storm,” (by the way, Anna made that analogy on my blog today, not me) think of you everyday. I totally understand how writing enables you to cope. Keep it up because it also helps the rest of us.
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Thank you both Marie and Anna for sharing this extremely moving, and informative post. Your honesty and frankness really convey the reality of life with metastatic breast cancer. Like Jody I will re read this over and over – thank you so much and I also look forward to reading more of your writing.
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I am speechless and honored by your honesty. Thank you.
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Thank-you for all that you wrote. It feels like you voiced all my jumbly thoughts in ways I never would be able to. That well-trodden path that those of us trudge down can seem so lonely at times. You offer more support,sanity and serenity to me and others like me than you will ever know! jill
Always try to do the next right thing
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Hey, Anna
I am also one peeved woman with a terminal disease.
I am 45 and I presented with Stage IV via a small volume of bone mets. I have found a lot of support with the MBC Network (www.mbcnetwork.org).
But I am tired of people making a buck off this disease. “Squeeze the Boobies”? Oh please. I am down to “Righty” and many of my fellow Stage IV friends have none.
Why don’t we have men, women and children wearing “Grab Your Nuts” gear? (By the way, testicular cancer is curable today–thank you Brian Piccolo and Lance Armstrong. Mestatic breast cancer isn’t.)
Early detection is important. But it is not a cure.
Never mind squeezing the boobies, I say quit pinching the pennies. MBC research gets about 2% of funding. I bought a bucket of pink chicken for that?
The SABC, the biggest annual event on the breast cancer research and results calendar, just concluded. How much did the scientists have to say about MBC? Practically nothing. Like the Cubs, it wasn’t our year.
I am tired of telling people I will never be finished with treatment.
I am tired of people dancing on my grave every October. Metastatic breast cancer is not an “UP With People” NFL halftime celebration. For me it’s an incurable, underfunded and largely misunderstood disease.
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Katherine, I love what you had to say here and how you said it!
“I am tired of telling people I will never be finished with treatment.” Me too so I never really tell people. They just look at me sort of cock-eyed when I try to explain.
But I consider myself lucky because so far I am N.E.D.
Best of luck to you! Debbie
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Anna, it’s so unfair how right you are. How metastatic disease doesn’t fit neatly into the Survivor fairy-tales we all hear about kicking butt and moving on with our lives. Despite the origin, the looming doom is the same, and our need for comfort and answers has to come from each other.
Keep writing, and I’ll keep reading.
The Carcinista
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Anna, I cried when I read this. Thank you for your honesty. Beautiful, sad, moving, true, angry. Brilliant.
Thank you.
Sarah
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Anna, I too was moved to tears of rage by your anger and your beautiful writing. I’m Being Sarah’s partner and so have lived and cried with her through years of doubt, fear and treatments. And we’re in a good place now, the place of ‘watchful waiting’ – but I completely empathise with you about the tests, the scans, the tension of waiting for results. I live constantly in the present moment now, treasuring our time as it is happening. Thank you for your inspiration – and for all the other women (and the feisty blue gecko!) objecting so eloquently to the ‘Survivor fairy tales’.
Thank you,
Ronnie
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What a powerful piece, thank you Anna. Today your blog got one more follower – I look forward to reading more of your writing.
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Anna I had hit the ‘Post Comment’ button too quickly … I’m still thinking about and deeply moved by your post. I want to wish you health for 2011.
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Dear all – I continue to be overwhelmed by the response to this post. Your comments and outpouring of support inspire me to keep writing and keep the reality of this disease in the public eye. My best wishes to you all and thank you again for hearing me.
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The response doesn’t surprize me Anna 🙂 I have been overwhelmed by the outpouring of love and support from readers when I have shared my own struggles. The blogosphere is an amazing place sometimes!
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Anna,
Eloquently written and tragically descriptive of the lives led by those of us with BC mets. Thank you so much for sharing your story in such depth. It is articles such as this that I hope will one day end the pink glorification of breast cancer and force a nation to realize that there is nothing “fun” or “pretty” about this disease. CJ from METAvivor.
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This is wonderful – thank you for writing it. At Christmas an in-law talked to me about my Stage IV cancer, explained that they really do not want to see it in their life. She said she preferred denial – and when I told her that right now there is no denial – no way out – no end to treatment – so little funding for research and my end will be the destination of all who walk the Stage IV road. We just share staging posts and journey experiences – but in the end we will not be”In the Pink”. Then she said, as if I had let her down, “Then there is no hope”, and walked away without another word – not even a hug. What a great family Christmas story! We are out here on a limb listening to the world shout, “Why are you out there? Come back in, people are looking!”
Thank You
Linda
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Thank you for this refreshingly honest look at life *with* cancer. It has helped me further underdantd what a dear friend is going through.
Keep writing, keep yelling. You do deserve it.
And I’ll keep praying, for both of you.
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I feel like I’ve found a soul sister. You express what I’ve tried to express and your words feel as though they come from MY heart. Thank you.
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I miss Rachel so much already. I’m thankful for every word she wrote. It breaks my heart to read the words she wrote about her feelings regarding the recurrence, “I had let everybody down.”
This is one of the most poignant posts I’ve ever read. I felt that way the first time I read it and I still do. Thanks for sharing it again, Marie.
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I am still reeling over Rachel’s death and the fact that we had Susan taken, too and there was little more then hours in between. I don’t think ONE of us got a chance to catch our breath before we were choking tears and gasping all over again.
I thank you for reprinting this today. I have made so many friends in six months since I ventured into social media and there is so much that I want to know about the years prior…..
A reminder to all of us…… we need to be loud in support of **research** particularly for metastatic disease…. and loud in our (now) DISGUST that early detection is still the best we’ve got. And early detection isn’t anywhere near the goal line…… Lots of pink shoes running toward the goal line…. They ran right into a hamster wheel and that is where we’ve been for decades.
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I was part of a yearly breast cancer event meant to “celebrate our victories.” It was quite an informational event and did include a session on metastatic BC, so I invited one of my friends who was undergoing a recurrence to attend with me.
However, looking at the event through my friend’s eyes, I was embarrassed and appalled at how insensitive we were to those in the audience who were not necessarily going on to victory. And how untruthful.
When I wrote Fine Black Lines, I gave the manuscript to a woman who was/is active in the breast cancer sommunity to review. She said “It isn’t positive enough. You need to include the happy ending.” I included “A Reflection on Happy Endings,” but I left the book as honest as it was. .
Well, everyone doesn’t get a happy ending. And even for those of us who live for many years like I have been lucky enough to do, there can be consequences like lymphedema (every week I go to physical therapy), etc. The various “awareness” campaigns with the sea of pink and smiling faces have done everyone a disservice.
I really appreciated Anna’s post and thank you, Marie, for reposting it.
My friend died.
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This post brings tears to my eyes,my sister fight this disease for so many years,everytime it recurs we all cry and ask God to helped us through this,but it never stops she lost her battle in 2009 The same year i have had a modified radical mastectomy and was diagnosed with stage 11 BC with metastatic lymphnodes.My heart goes out to all of you who fight this disease to stay positive and believe that there will be a cure soon.Charlotte.
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Oh Charlotte I am so very sorry to hear about the loss of your sister and sadly, the writer of this piece died earlier this year too, so we all share your sense of despair at the cruel nature of this disease.
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Thank You!We will never forget! May Pink allways remind us of those warriers!
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I am so glad you posted this Marie. Rachel’s writing was so great and I love that she speaks her truth about Metastatic Breast Cancer. Thanks to Rachel and so many others that get it , we are trying to see a change in Breast Cancer Culture especially when it comes to the metastatic community. This disease has so many cruel sides to it while we try to make sense of it and see a difference. While we work on a vaccine to prevent breast cancer we must also see that money is spent on MBC so we stop losing so many lives to this disease. On World Cancer Day I learned that Breast Cancer causes the highest number of deaths of women in the world. Rachel so clearly talked about the sense of victory when she thought she was in the clear and going back to her life and then she was faced with her metastatic recurrence. We are trying as hard as we can to get the point across to the public when it comes to the truth about breast cancer. We are just going to have to “keep on keeping”. Thanks Marie!
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You really captured what Rachel was all about Susan – fearless in her advocacy
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