I’m a four-year cancer survivor. Not only that, I’m currently, as I speak, survivING cancer. Yep: I’m back on chemo. I’m playing whack-a-mole with cancer – or maybe cancer thinks it’s playing whack-a-mole with me. But I keep coming back.
Let me tell you who I REALLY am. I’m a native New Yorker. I’ve been with my husband for 25 years. We have a 10-year-old daughter starting middle school in September. I’m a former budget backpacker who’s trekked in Nepal. I’m a business consultant specializing in start-up companies. I co-founded a nonprofit arts project online. I’m a writer and artist.
Please note that none of this was in my medical file until very recently. Just a little bit of it is in there now. I want my doctors to be curious about me, even when they have to see 30 patients a day.
My own personal key to the kingdom is something from which everything else flows. It all boils down to two words. They’re easy to remember. Ready?
1. Be of service.
When I was first diagnosed with late stage ovarian cancer, I started compulsively taking photos of myself on my iPhone. I wanted to see that I was still here. My appearance began to change rapidly: I took photos of my bloated belly before surgery, and the staples in it after. I even insisted that my surgeon take a photo of the grapefruit-sized tumor that had engulfed my ovaries, and he did. Yeah… I was that curious.
When I was taking photos of myself I could look at myself at arm’s distance. I was literally able to get perspective: I am not my cancer. I could look at all the ways cancer changed me and could contemplate them, while still remaining… the rest of me.
The first time I lost my hair, I asked my close friend Julie to photograph me. I wanted my daughter, who was 6 at the time, and my nephew, who was an infant, to be part of the shoot. I chose to define myself during the shoot not as the horror freak-show I felt myself to be, but as the mother and aunt I knew I was.
Later on, when I saw the photos, I was surprised. The woman in those photos is a strong and playful woman. I felt very good about the photos and the experience I had during the shoot itself. Then Julie asked if I thought anyone else would benefit from this process. To answer that question we co-founded the The Identity Shift Project, the mission of which is to bring new perspectives to healing through artistic collaboration with people experiencing significant life change. We’ve photographed people living with cancer, providing them one small but important way to tell their stories. They’ve told us that the experience is empowering.
Turn a problem you solve for yourself into a way to serve others.
2. Educate yourself.
I ask my doctors to show me my scan images. I compare notes with other survivors. I do my own medical research on clinical trials and talk with my doctors about them. In the beginning, I wasn’t a strong advocate for myself. I was intimidated. But I kept pushing myself to engage.
Sometimes I seem like I’m more of a colleague than a patient. I think of my doctors like my accountant or my lawyer: I tell them my goal, and they tell me how to get there. Then I decide if I’m comfortable with it, and I may push them to give me other scenarios and options. I learned I could push back with my doctors, if I felt I needed more information. They may not always appreciate this when they’re managing a heavy patient load, but I can’t take that personally. As Kris Carr in Crazy Sexy Cancer says: I’m CEO of Save My Ass Technologies. My doctors work for me.
3. Make meaning: Have a worldview about endings.
Get used to the idea of your death. Don’t pretend that it isn’t going to happen to you. Understand that our society still equates cancer with death, because we’re still figuring out how to manage it medically and socially. So when people are awkward around the fact that you have cancer and are in treatment and may have to leave the party earlier than they do, forgive them their awkwardness.
Also: Just because you have cancer doesn’t mean that you become a nicer, better person. Often the opposite happens. You get pissed as all freaking hell. You’re irritable. Your loved ones have trouble gauging your emotional sensitivity. You cry. You forget stuff, and people mistake that for thoughtlessness. You become a walking reminder of everyone else’s certain death. Sometimes it just sucks to be you.
Talk about it. With your closest friends. With a counselor. With other survivors. With your loved ones. It’s hard and urgently important. It does get easier to do the more you do it.
Meaning isn’t made in a vacuum. It requires interaction with other people.
It’s hard to be scared and curious at the same time. I much prefer being curious. Sometimes being scared takes over, and that’s okay, because the truth is: it’s not easy. Being scared, sad, or angry are legitimate emotional responses to a difficult situation. But they’re not useful as permanent states. Staying curious generates this question on an ongoing basis: What am I grateful for?
To answer that question is an act of meaning-making.
Cancer is the loss of meaning on a cellular level. Tumors have no bodily function; they’re indifferent to the larger order, which is us.
The good news: My body knew how to be born, and it knows how to die. Death and suffering are two completely separate things. Death is inevitable. Suffering need not be. Holocaust survivor Viktor Frankl had this beautiful insight: Forces beyond your control can take away everything you possess except one thing – your freedom to choose how you will respond to the situation.
To which I say: Stay curious.
This post is based on the opening keynote speech I gave at the 25th Annual CancerCare Conference in July. Learn more about CancerCare’s mission here.