“Mom, which of these drawings do you like the best?”
“Oh, I don’t know. I guess the middle one.”
“Why?”
This is the way our conversations go these days.
He is a curious person and is trying to make sense of the world. Even when the world doesn’t always make sense.
“We eat some fish because they are mean. Other fish are nice so we keep them as pets.”
“Um, well… Not exactly.”
The other night, I was putting him to bed. We were doing that parent-child thing of trying to express the enormity of our love for each other.
“I love you to the moon and back again,” I said.
“I love you to infinity and beyond,” he said.
“I love you longer than forever,” I said.
He became thoughtful.
“Mommy, you can’t love me after you die.”
I smiled, pleased to have an opportunity to teach him something about the nature of love.
“That’s the amazing thing about love. My love for you is so strong it will live longer than me. You will feel it inside of you for the rest of your life, even if I’m not here.”
He grew earnest.
“But your heart will stop beating when you die. You can’t have love without a heart.”
“Love doesn’t just live in my heart. My love for you will continue on in your heart.”
Then he burst into tears and threw his arms around my neck.
“Mommy, I don’t want to be the little boy whose mommy died.”
I embraced him, stunned into silence. I looked for words of comfort.
Cancer has stolen the easy assurances I gave my girls when they were his age and coming to terms with death.
My children have no illusions about the mortal dangers of cancer after losing their uncle to it two years before my own diagnosis. Parental death is also within reach of their imagination. They know their own father was only three when he lost his father to a different disease.
Death, once they can envision it, is not just something other people have to deal with. Consolation becomes harder to summon.
But I did.
“You know how I exercise to make my body strong?”
“You run a lot,” he said enthusiastically.
“Yes. I do that because it makes my body strong so I can be here for you. I do everything I can to keep that cancer away. Do you remember how sick the chemo made me?”
“Yes,” he said.
“Do you know when I felt tired of taking that yukky medicine, do you know what I would think about? I would think about how I need to be here to help you grow up. I would think about how much I want to see you become a young man. And how much I want to see your sisters become young women. And then I would take the medicine again.”
I paused and then asked a question he has heard a hundred times.
“What’s my most important job?”
“Taking care of me and my sisters.”
“YES! I will do anything to do that job and to keep doing that job. You are my most important job ever. I love you THAT much.”
He took in my words and we had a long snuggle as he drifted off to sleep.
Later that night, a heard a small fist knocking on my bedroom door.
It was my son, once again in tears.
“Mommy, I’m scared of the dark.”
I let him in my bed and calmed him down. We held each other and fell asleep.
Because sometimes, that’s the only solace you can give.
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.
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.
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.
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.
