I can’t stop crying today. I finally decided to stop fighting it. So I made a slideshow of my brother’s all-too-short life. I know there are more pictures out there that should be included but this is what I had available.
I will always love you, Jer. I will always miss you.
Music by Cora Rose, available at CD Baby
Tags: grief
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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.
Tags: anxiety, attitude, changes, coping, courage, daily life, diagnosis, grief, healthy people, hope, identity loss, mental health, social media, support, survivorship
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Last month, a work friend told me about a gossipy lunch conversation she took part in. Some colleagues were sizing up the real life skills of the research professors in our department, predicting which of us would survive hard time in prison.
Smiling, she told me, “We decided you would make it. You have the skills.”
She knew it was an odd compliment, and we had a good laugh about it. Of course, I hope we never find out if they put their money on the right horse in that race.
I know that her praise was, in part, a nod to coping skills I trucked out this past year. Cancer treatment is definitely hard time.
I suffered a lot. I hated it. But I was a pretty kickass cancer patient. I knew how to stay on top of stuff, chase down information, use my resources, and persevere.
And of course I got by with more than a little help from all of you. So thanks for that.
But now I am entering new waters.
HMS Survivor
Although diagnosis is a process, there is usually a clear moment when you hear the words, “You have cancer.” There is a distinct Before and After that you can turn over in your mind, the moment where everything changes. You slip into an alternate reality and must make your way through.
Survivorship does not have such a clear beginning. There are those who believe you are a survivor from the moment you are diagnosed.
For me, survivorship came in phases. I first felt like a survivor when the Big Treatment (chemo, surgery, radiation) was over and I had the first strange sealegged experience. Then, with my last infusion in November, I was no longer doing anything medical to fight any lingering cancer cells that may not have read my very passionate eviction notice. Finally, two weeks ago, I had a medical apparatus — my port — removed from my body.
Cancer survivors often flash each other their port scars. It’s our version of a secret handshake.
I have a scar now where the port used to be. The Survivor Ship has set sail.
So now what?
I am still tired. My body is different. I have signs of PTSD. Havoc has been wrecked in many parts of my life.
Now that the hard time is over, am I supposed to pick up where I left off?
It’s not possible. Too much has changed since I first heard those words, “You have cancer.”
So today, I went to my cancer center’s survivorship clinic. I spent half an hour this past weekend filling out a few surveys designed to assess psychological, social, and medical issues.
I met with a social worker and a nurse for a total of three hours, which is a luxurious eternity in the medical world. Both were wonderful. They educated me in a way that attended to my particular situation. It has already helped alleviate my anxiety. The nurse produced this beautiful two-page summary of my diagnosis and treatment that I will have to give to all my future doctors. She discussed all the possible late effects of my treatment and how I should plan to monitor and manage them. And she said the priceless words, “You are healing very well.”
The social worker is the first counselor-type person I’ve met with since my diagnosis who I could talk to honestly. I saw two other therapists during my treatment, but neither had an oncology specialty. I felt like I was having to educate them too much, so I quit counseling as an energy preservation measure.
This social worker, it turns out, is herself is a survivor.
I spoke with her at length. My takeaway was this. During treatment, survival took one set of coping skills that could be best described as rallying: my friends, myself, my family. Treatment is about continually picking yourself up and moving forward.
After treatment, survival looks different. From what I gather, it’s more about waiting and acceptance, letting things heal, letting time pass, and allowing your new self to unfold.
I am a problem solver. I am happiest with something to do. I imagine that it’s my capacity to rally that led my colleagues to imagine me as a successful hard time prisoner.
Like my cancer treatment, most jail sentences have a beginning and an end.
Being a survivor, however, is a life sentence.
It seems like there’s a lot of waiting. Waiting, waiting, waiting…
I don’t know how I’ll cultivate the coping skills for that.
Sing it, Gloria.
Tags: attitude, body issues, changes, coping, daily life, diagnosis, education, essay, gratitude, grief, mental health, self-advocacy, survivorship
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As 2010 comes to a close, I can’t look back.
The networks and interwebs are abuzz with recaps of the year –– Best of, Worst of, Most Important, Funniest, Craziest. My blogger buddies are doing wise and witty retrospective posts.
All I can think of as I cross the 2010 finish line is, “Ugh!”
I don’t want to look back. Like a seedling seeks the sun, my weary body and assaulted spirit turn toward the future.
The past few nights, I have had dreams of living in a war zone and being attacked by vampires. I wake up in a panic, relieved that I have narrowly escaped death.
And those words resonate in my mind everyday. “I almost died this year.”
If my treatment hadn’t worked, that would have been it for me. My cancer was aggressive and advanced.
I better understand the women I met who tell me that they have erased the memories of their chemotherapy. “It’s like a bad pregnancy,” one survivor told me. “You have the baby and the memories of suffering go away.”
I don’t quite have the metaphorical baby in my arms. I just see my altered body and struggle with my limited energy. Despite all that the chemo wiped from my brain, I have not forgotten my suffering.
No, I don’t want to look back. I am instead staring straight ahead into the future.
Happy New Year, everyone. May it be a year of happiness, health and healing.
Tags: changes, coping, daily life, grief, trauma
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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.
Tags: advocacy, attitude, coping, courage, gratitude, grief, parenting, self-advocacy, social media, support, survivorship
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