Over Our Heads
January 18th, 2011
Even if you respond well to treatment, survivorship involves making space for the reality of cancer in your life. There may be stretches of time where you do not feel defined or limited by cancer, but it hangs over your head, like the legendary sword of Damocles.
Damocles was a courtier who voiced his envy of King Dionysus’ power and position. The king traded places with him so that Damocles could experience royal luxury, but he also hung a large sword over Damocles’ head, suspended by a single horsehair.
The original tale is meant to illustrate the burdens of leadership. Even though I carry a different burden, the image of the sword keeps coming to mind as I try to articulate the survivor experience.
For us, that sword is simply mortality. I have never been in denial of my mortality. When I have had hard decisions to make or am struggling with balance, I have often asked myself, “If I were to die tomorrow, what choice would I want to have made?” My days have always been numbered in my mind. The finality of life brings clarity.
The difference is between a theoretical experience of mortality and having sat in an exam room with doctors looking at the results of a battery of tests and seeing the serious expressions on their faces. It’s hearing them say that, if you don’t respond to treatment, your chances aren’t good. It’s having to entertain, from moment to moment for months on end, what it might mean if this really is it.
In other words, that sword hangs over all of our heads. The difference is that cancer survivors’ sights have been pointed upward. We have taken in the sharpness of the blade, the fragility of the thread.
Given the progress of science, many of us may have unknowingly escaped the snap of that hair. Maybe we were exposed to the polio virus but, because of vaccination, we are fine. Maybe a water filtration system kept a deadly bacteria out of our body. These lifesaving moments go unnoticed. They do not mark us in the same way the rigors of cancer treatment do. Nobody calls themselves a polio survivor just because they got a shot.
I am learning to live with this dread. And it’s not just because I walked so closely with death this past year. It’s because I know that 30% of women who successfully complete treatment for breast cancer will relapse and develop metastatic disease. I know that mortality rates have not improved much over the past 20 years. An optimist might look at those odds and say that there is a greater chance that you will not get metastatic disease. Most of the time I think that way.
For those of you who have not had cancer, it might even seem like unwarranted anxiety. But consider that approximately 40% of adults have some fear of flying. The odds of actually dying in a plane crash, by contrast, are 1 in 20,000, or 0.005%. Cancer survivors seem pretty rational in comparison.
The dread is there and rears its head sometimes. Yesterday, an article in the New York Times detailed the experiences of women with metastatic breast cancer. It was very sobering and shook me up. I tweeted about it and found that many other survivors –– some of whom have metastatic disease –– were also moved by it. We had a spontaneous twitter support group.
I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone.
As Anna explained:
Women with metastatic disease are sometimes shunned by other breast cancer patients because they represent our greatest fear. We treat them as if their condition is contagious.
Even without that rejection, the existential loneliness of survivorship is difficult all around. The people who love us most don’t always understand our angst.
I am learning from my friends, though. They help me see that the trick is not to live in denial. So I read the statistics that I quoted above. I know my odds. As Jody says,
Deb reassured us that life does not end the moment you learn you have “mets”. Yes, it is your worst fear realized, but you are still you. There is still love.
The conversation went deeper. It was as emotional and intimate as Twitter can get.
We were moved by the experience and still tweeting about it this morning:
Of course, since this was Twitter, some weird robots chimed in too:
I love my twitter friends. They give me strength, courage, and company. But the robot got this one wrong. I will do as Jody suggests and look cancer in the eye. I will come to terms with that dangling sword.
But I will never, ever love the mets.
This entry was posted on Tuesday, January 18th, 2011 at 10:02 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’m glad to be on this journey with you, Lani. What an awesome post.
The greatest thing we can do for each other is to open our ears and hearts. At this point in my life I can’t imagine living otherwise.
Love and peace,
Jody
This was great!!! Love it and love you!
thank you for being there for me, jody and beckye. i am humbled and grateful.
Wow ChemoBabe, what an incredible post this is, and I’m reliving that Twitter discussion all over again. I have chills. Living with metastatic cancer is a terrifying reality, yet mostly I find a way to just breathe and get through the day, or the scan, or the doctor’s appointment, or the chemo or whatever challenges are being thrown at me. But what I’ve genuinely come to realize, particularly in recent times, is that I cannot do this by myself. As you saw on my Tweet, I just can’t do support groups, as I don’t seem to fit (plus I’m usually the youngest by at least 20 years give or take) and the issues are just completely different. Therapy doesn’t work either as it’s difficult to talk to someone who hasn’t been there, professional qualifications aside. I also find it hard to talk to people as I’m a reality that they don’t want to think about. But thank goodness that I have found you and the others that make up this wonderful online community. There is always someone to listen and pull me back up when I feel like I’m falling. By engaging with this community, I feel like I gain a deeper understanding every day of what it means to live with this disease, and more importantly to live my life. Dangling sword or not. Thank you for your friendship.
P.S. I don’t love The Mets either !
Hi Anna, are you connected to any young adult cancer groups? These are 2 I’m aware of: @HHHFOUNDATION in Portland area (just heard about them, don’t know much about them), and in Canada where I’m located, YoungAdultCancer.ca with @GeoffEaton founder.
Best wishes, glad you found a community here.
Great post! Sorry I missed the twitter conversation yesterday. I know I’m not always in the thick of it, but I do enjoy reading and chiming in on occasion.
Lots of love to you and none to the Mets.
I love this post and the thought behind it. I started my blog in hope of connecting with women who had similar experiences and what I found has exceeded my expectations. The community, while understanding, is so very caring. I also go to a group occasionally, actually called a young women’s group, but at 46, I’m still younger than most. It’s true there are only a few MBC patients and I’m starting to understand why. I wish more felt they could attend. To me, up until recently, I’ve only known women who did not survive this killer, and think mets looms large for everyone. I wish I didn’t feel that way. I do so hope it’s not true, but it’s hard to forget what I’ve seen. It’s why I don’t segregate the stages, as some people in group might do. We all heard a doctor say it’s cancer. I feel we’re all in it together. I hope that doesn’t sound naive, but that’s how I see it.
Thanks for such a beautiful post.
Hi Lani, What a great post, thank you so much for keeping the conversation alive and thanks for the great support and flow of love, faith and hope that you are encouraging. Just re-reading these tweets here started tears to the eyes again, not just sadness but gratefulness that we have each other. Hate the Mets, Love the Cowbell, Here’s to a long journey.
Love, Deb
Thanks for this post. Very moving. Can’t say anything else right now because of lump in throat.
Lani, I’ve used that very metaphor to describe our experience. It hangs over those of us who’ve been diagnosed, as well as those of us who have been told we have a BRCA gene that forces us to consider removing parts of our body to forestall that sword. Wonderfully written. Thanks.
Such good points: the “sword hangs over all of our heads. The difference is that cancer survivors’ sights have been pointed upward;” and, “Nobody calls themselves a polio survivor just because they got a shot.”
Lani, Like everyone else has said, this is a great post. The dangling sword analogy is so perfect!! That is how I feel much of the time, especially with the BRCA thing too. Sometimes I still feel like a ticking timebomb. I wish women with mets didn’t feel excluded. I also don’t like it when stage 1 women (I was not stage 1) are considered to have it easy. I hate all generalizations! One more thing, I’m older than you, but I always still feel I look way too young when I am in the oncology department! Keep up the great writing!
I used the Sword of Damocles analogy myself. It’s SO accurate for us cancer patients.
I’m blessed with the ability to not worry too much – I attribute it to my ADD.
I have a shoulder problem right now and know it is not cancer of the bone – and yet, I’ve googled that a few times, just in case. It’s just part of our lives now.
I also am extremely open about cancer and never hide it. I have nothing to be ashamed of and won’t pretend a life-changing event didn’t happen to me. I’ll make jokes but also am realistic: it probably won’t come back – but it could. That sword will be there forever. I have to face that fact. If you care about me, you have to face that fact too. Denial doesn’t help anybody.
Today, fellow cancer blogger Daria of Living with Cancer died. It’s a sobering reminder that even the best of us, the most positive, those who fight with all their might, who face their disease with grace – even they can suffer the worst this disease can do. And, yes. It can happen to us.
It probably won’t. But, it can.
I’m sorry I missed the twitter conversation.
Sorry I’m not on Twitter more often! Very good blog post and intriguing Twitter conversation. I can relate to Deb Thomas’ comment about once she realized her worst fear happened, she was able to move on again. I can’t say that having stage IV breast cancer was the best thing that happened to me, but so many great things have happened since I received that diagnosis. And I know there is plenty of hope for a long life even with metastatic disease.
I also commented on this article in a recent post. If you’re interested, here’s the link: http://www.tamiboehmer.com/2011/01/uneasy-statisticsmetastatic-disease-deserves-funding-and-some-understanding/.
thanks, tami!