Good Company
December 8th, 2010
At the Life Beyond Cancer retreat, I got a peek at what cancer and survivorship were like before the age of activism, blogs, and social networking. Kathy LaTour, editor of CURE magazine, had us roaring with her tales of treatment in the pre-pink ribbon era, before the rough edges of chemotherapy were softened by modern anti-nausea drugs like Zofran. She talked candidly about the indignities endured in a time when insurance companies didn’t know if they should cover wigs, about her ballsy confrontations with the insipidly bureaucratic receptionist about the need for such coverage.
That’s right. She had us laughing our asses off. About cancer.
It was laughter of recognition. A room full of survivors laughed because we knew. It was laughter of belonging. Her stories affirmed our own surreal experiences in the strange, alternative universe of cancer treatment.
During the retreat, we got that message over and over again. Brené Brown praised the strength of our vulnerability and the importance of our stories. Heidi Adams of Planet Cancer assured us that bearing witness to what we experience is, in itself, a form of activism. It paves the way for those who come after us, shining a light on this treacherous path we walk on.
And, indeed, I found that to be the case. Every woman I met who honestly told her story gave me a gift. The woman who had my same diagnosis who could not tolerate the chemo drugs and had to stop her treatment gave me a profound sense of gratitude for my own clinical response. The women living with metastatic disease helped me face my fears and recognize that I would not cease to be myself should that become my fate. The women who managed to work through their treatments or who made profound life changes in the face of their own mortality inspired me with their tenacity and courage.
We survivors need each other. We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place.
This week, when Elizabeth Edwards’ announced her decision to stop treatment, it felt like a punch in the gut to me. She was the public face of metastatic breast cancer, a disease that belies the typical narrative of the noble sister bucking up for a cure.
I tweeted about the news, along with others. In fact, I went into a twitter rant about the perpetual, cumulative losses of cancer. (You can see the kinds of things I was saying here, here, and here.)
Soon Edwards’ news spread like an electric current throughout my networks.
The next day, we learned that she had died.
Edwards’ story had different resonances for each of us, playing off of different notes of sadness and loss. With the first news, I kept imagining her family’s grief, remembering the awful mixture of relief and sorrow when we came to terms with my brother’s need to end treatment. Others who lost loved ones felt their own painful memories resurface.
When we learned of her death, we were struck again, and our mutual support continued. Mothers with cancer felt the unspeakable despair for the young Edwards children left behind. Those of us who struggle with the raw deal we have been handed with this disease remembered her courage and resilience. Her death became a focal point for my blogging friends, as people expressed the wide range of emotions that her death had left us with.
Just as so many of us only know each other through the words we share in our blogs or on Twitter, we knew Elizabeth through her words. And, as our words connect us to each other in this strange and lonely world, many of us felt that connection to her, another accidental tourist in Cancerland.
How peculiar to have the wind knocked out of me because a stranger has died. This is new emotional terrain for me. I didn’t cry when Princess Diana died. I don’t feel fazed by celebrity deaths in general.
And yet it makes perfect sense. There was catharsis in laughing with my fellow survivors at Kathy LaTour’s cancer comedy shtick. And there is catharsis in crying together now over losing one of our own.
Elizabeth Edwards had this to say about facing the strange world we enter into with a cancer diagnosis:
Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.
I am so glad I am not in this less good place alone. You help me to be resilient. Thank you for your company.
This entry was posted on Wednesday, December 8th, 2010 at 9:29 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
I completely echo your words, thanks CB for articulating this so clearly.
I also cried like a baby when I heard of a stranger’s death recently. She was a young woman with Breast Cancer diagnosed around the same time as I was. We had connected through our blogs, and I was totally knocked sideways to hear of her loss. But I didn’t actually know her in “real life”, but we had developed a closeness in this strange parallel universe.
So yes, we are in good company, and I am glad we are not alone.
Thanks and big hugs
P
xx
so grateful for your companionship, my feisty friend, even as we live our strangely parallel lives in different hemispheres. <3
you said this so well… it is so good to have each other… <3
Amanda, you have truly been a beacon to me. Your honesty and determination to love helps me stay sane. <3
Great post Chemobabe.
“We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place.”
This is such a good point CB, and one that I often try to explain to those around me, but with very little success. I think it is something that can never really be understood unless you have been there personally.
For the most part, Elizabeth’s death has left me feeling angry that yet another woman has died from this dreadful disease and that we are still no closer to saving so many others from the same fate. She was the public face of metastatic disease and her death is a stark reminder that this is not the “chronic disease” that many in the medical fraternity would have us believe. This is the reality driving a fear that so many of us struggle with every day, and one that I hope the public will not forget any time soon.
Anna, you and I share an interest in scrutinizing the narratives of cancer and trying to call out the BS. I am so grateful to have you on the job with me. Metastatic disease is not acceptable because it may be chronic for awhile, but we know how it’s going to end.
Sending love. <3
So happy to have found you as well Chemobabe. Who knew calling out the cancer BS would be my calling. It’s a long way from me previous life as a very dull tax consultant ! Sooner or later the world will start listening. Love your work
Lani,
You are a blessing to me and so many others. I love the phrase – the “laughter of belonging”…in the club we never wanted to join. But oh, the friendships! And the shared commitment to ease another’s journey.
The moment you were able to articulate — for the group — about your own fear of recurrence was a miraculous thing to have seen. You helped SO many women in that moment and pushed a major fear off the table. In voicing things we begin to face them. Words define. Hearing them piece the air makes it real. And in time, but never completely, those words help put the fear in perspective. We have now. We have this minute. We had the incredible weekend at LBC10.
And we have our shared community in which to talk cancer, fight cancer, lift the lid on cancer.
This is funny, I have more to say but have to run off to an appointment. There are many things about EE (http://womenwcancer.blogspot.com/) and her cancer, what is myth about metastatic disease and what is not. And the word cure? Don’t get me started.
Love to you,
jody
Lani,
We ARE in good company, aren’t we? What an astute take on “sisterhood,” a term I’m saddled with, but tired of. It’s hackneyed and somehow missing something. I love your line about “accidental tourists in Cancerland.” The worst part of being this tourist is being stranded. We can never truly go home, again, because home is no longer our safe place. Sometimes I think I should have gone with “Scared and Fearless” as a website name because that describes every one of us to the core.
Elizabeth was more than a sister in cancer, she was the face of hope for anyone who’s experienced a devastating loss or serious illness. In many ways, we lost our hope when she died, but I know it’s only temporary, for like Elizabeth, we are resilient. I, too, think about her children, remembering what it was like when my father died of cancer when I was not much older than Jack and Emma Claire. I know she spent much of her time “reconciling” her children’s feelings about their father. She was brutally honest about everything it seems, especially about living and dying.
My husband doesn’t understand my profound sense of loss at her death. A few minutes ago, I told him about your post, and how your words, and those of your readers are my words and feelings as well. In true Comanche/guy fashion, he shook his head and said, “I still don’t understand it. I acknowledge it, but don’t understand it.”
“That’s OK,” I said. “I’m in the good company of women who do.”
XOXOXO,
Brenda
Chemobabe,
I just discovered your blog and I’m so glad to find another person who “gets” it, although it’s also sad there are so many of us out there! It’s so true others don’t really understand no matter how much they love us. This is a well-written post that expresses many things, much to think about in there. I, too, was greatly impacted by the death of Elizabeth and I’m posting about it tomorrow. (hope you can stop by) I find great meaning in her words, “resilience is accepting your new reality.” Thanks for sharing your thoughts, they are well stated.