Listening to the Silence

In my last post, I wrote about hoping, trying to open and deepen and awaken. What does that look like in my day-to-day life? Some of what I’m aiming for is tangible: meditating for 20 minutes a day several mornings a week. Writing (reflecting) often. Much of what I’m doing is less tangible. I’m trying to be in my body and in the world and in the moment in more mindful ways. Trying to hear the silence and listen to what comes out of it.

Pausing my work life has created a huge opening. For the first time since I started my career 15 years ago, there is space in my life for new, as of yet unknown “things” to enter. I have always been very Type A. I have always been very much a planner. I have always struggled to be still. And for the past 9 and one half years since my son was born, I have also juggled a fairly consuming career alongside the consuming life of a parent. When I think about when I’ve had “space,” I think about the week my family and I spend on a secluded island in August, when all of life’s “noise” falls away leaving a beautiful, internal quiet. I think about the 8 weeks of maternity I took when each of my two children were born, weeks that weren’t particularly quiet, but were beautifully simple in that all I had to do was focus on my babies. So much of my life in between my maternity leaves and our week in August has been filled with going, doing, rushing, fixing, thinking, making, doing, doing, doing. Just writing about it makes me breathless.

Looking back two years, five years, ten years from now, I expect I will think of the months when I was in treatment for breast cancer as a time when I had space. Creating that space has been intentional. I know I need it to truly open and deepen and awaken.

Why I Love Eve Ensler

Eve Ensler, perhaps best known to the world for writing The Vagina Monologues, also wrote the following in her cancer memoir, In the Body of the World:

What if… when you got sick you weren’t a stage but in a process. And cancer, just like having your heart broken, or getting a new job, or going to school, were a teacher? What if, rather than being cast out and defined by some terminal category, you were identified as someone in the middle of a transformation that could deepen your soul, open your heart… And what if each of these things were what we were waiting for, moments of opening, of the deepening and awakening of everyone around us? (p88-89)

What if?

When I read this passage in Ensler’s book, I nodded, I smiled, I dog-earred the page, I felt not-crazy. I felt like someone understood why, instead of running screaming crying in the weeks after my breast cancer diagnosis, I flung my arms wide-open, welcoming transformation. Often since my diagnosis, I’ve thought: I want to be changed by this. Not because I long for a better life or a better me. I have a wonderful life and all-in-all, I feel pretty good about me. But because if something as big and surreal as breast cancer is going to land in my 39-now-40-year old lap, there has to be something to show for it. I want there to be something to show for it.

And so here I am, opening, deepening, awakening. (Hoping and trying, at least.)

(In addition to reading Ensler’s book, I encourage you to listen to Krista Tippett’s interview with her.)

Deadly Comparisons

I’ve been anxious to post an addendum to my last entry. Though I imagine this goes without saying, it has nonetheless felt very important that I don’t inadvertently imply that most people dealing with breast cancer feel the way I (and many of the women at last week’s support group) feel. For example, I know women who, unlike what I’ve shared, can’t or couldn’t get back to their pre-breast-cancer lives fast enough. Which of course makes another kind of perfect sense!

My problem is that I’ve compared myself to these women—just as I’ve compared myself to women who happily, gratefully work(ed) as much as possible through treatment. comparisonAnd I’ve let the discrepancies between our approaches trigger my what-is-wrong-with-me? voice. What I don’t want to do is trigger anyone else’s what-is-wrong-with-me? voice! Or to lead people without breast cancer to assume their friend, sister, mother, daughter will feel as I do under similar circumstances.

Oh the deadliness of comparison! How can we let ourselves find comfort in shared experience without then also thinking we are less-than—or better-than, for that matter—when our experiences differ?

My First Support Group: What Some of Us with Breast Cancer Really Feel

I went to my first breast cancer support group last night. I’ve never been one for organized group activities—guided tours, support groups, church. Even committing to scheduled exercise classes proves challenging for me. So it’s taken almost four months to get myself to this support group that meets at the (amazing) Cancer Connection just a few blocks from my house.

I am so glad I finally went. I spent 90 minutes hearing my own feelings (which have often felt odd and wrong) reflected back to me in the words of seven other women with—or just on the other side of—breast cancer.

As emotionally “good” as I felt in November and December, there was also a lingering guilt. A what is wrong with me that I have breast cancer and I’m happy? kind of guilt. And then, as I started to feel better physically, the “what’s wrong with me voice” intensified. What’s wrong with me that my emotional state is plummeting now that I’m feeling better physically? What’s wrong with me that I’m mourning the loss of those earlier months when I was so debilitated? What’s wrong with me that I’m in no rush for this whole experience to be over?

Last night, one woman after the next expressed what I have been feeling. To my right, a woman about my age talked about the mixed emotions she feels as she faces her final chemo infusion and the end of her cancer treatment next week. Now what? She wondered. To her left, another young woman toward the end of radiation and cancer treatment echoed similar sentiments. She talked about how all these appointments have become her routine, and that in some strange way, she’s going to miss them. She’s going to miss seeing the same nurses every week. Miss the attention and the care she receives from the people in her life.

I talked about how I don’t want my life to go back to normal, back to the way it was. That I want to be changed by this experience. That I feel such a sense of loss when I feel the old slipping back in; such mourning when I think about all of this being over and forgotten.

Across from me, a woman who finished treatment in the last several months said her friends want and expect her to be fine now, and she feels like she’s just starting to grieve. She said that listening to the rest of us talk, she realizes that the reason she’s struggling emotionally is because everything and everyone around her has gone back to normal, but that is the opposite of what she wants.

The what is wrong with me? voice slipped right away in that room.

A friend of mine who spent last year in treatment for breast cancer told me some months ago about a photograph hanging on her fridge. It’s of her and her two daughters when she was in the middle of chemo. “I’ll never take that picture down,” she said. “I never want to forget that time.”

I’ve clung to that story in the last several weeks, as I’ve started to feel better physically and less so emotionally. And when my friend and I walked last week, I asked more about it, hoping that my desire to hold tight to this cancer experience was something she might understand. (After all, it’s not what one is “supposed” to feel. We’re supposed to push through to the other side, as quickly as possible. Surrender to a crappy year, then move on, grateful it’s over.)

My friend very much understands—very much knows—the desire to hold on. And as I’ve just discovered, so do many other women with breast cancer. So it turns out that my feelings aren’t as strange as I thought. (Suleika Jaquad, who writes about her leukemia in an award-winning New York Times’ column, is someone else who complicates the concept of “getting back to normal” post cancer.)

I suppose this is a reason for support groups. Maybe I’ll sign up for a guided tour somewhere and even start going to church. 🙂

On Being Bald

My son covers his eyes anytime he sees me with my head uncovered. My baldness makes him uncomfortable. I don’t blame him, and I do my best to wear a hat in front of him. But part of me wants him to get used to this new me. To be at ease with me no matter what. Plus, I think his averted eyes touch the part of me that isn’t entirely comfortable—and I want to be at ease with myself no matter what.Image 4

The other night I went to a dinner party with mostly close friends. Getting ready, I was tempted to wear one of the wigs I bought several weeks ago but have only worn once or twice. Once again, I chose not to because somehow, wearing a wig makes me feel like an imposter. Like I am trying to pretend I don’t have cancer, that I’m not in chemo, that I don’t have a hairless head (not to mention a hairless many other things). Mostly, I don’t want to pretend any of those things. So once again, I wore one of my “cancer scarves” instead. I “owned” my cancer.

Until I was at the dinner party with one of those infamous hot flashes. Part of me so desperately wanted to bare my head. Not because the heat was so unbearable, but because I wanted to really own my cancer. I even slipped into the bathroom and slipped off my scarf to try it out in the mirror. Did I have the nerve to do it? To walk out of the bathroom fully unveiled? I didn’t. I felt too exposed. Too naked. Though I’m not even sure whether my discomfort had more to do with me, or more to do with how others might feel in my naked presence. Would my friends want to avert their eyes like my son?

IMG_5128Today I took a bath with my six-year-old daughter. “You don’t feel uncomfortable seeing me without my hat?”

“No, but I still think you look weird.”

I love weird and I love her six-year-old honesty and I love that she is just as at ease with me now as she was before cancer changed our lives. Maybe the next time I want to take my hat off in public, I’ll think of her.

Endings

I continue to feel okay on the Taxol. The IV steroids that I get the day of chemo keep me wired through the next day and night. Then I crash for a day or two (as I’m doing now as I write this). By the weekend, I am tired but functional. I definitely feel my body weakening. Tried and failed to run last weekend. My legs and lungs just couldn’t do it. But despite the Image 1fatigue, now that the nausea is gone, everything feels easier physically.

My emotions have been less easy these last weeks. I’m doing my best to “not resist what is.” To open my grasping fists and surrender to whatever feelings and circumstances arise. The sadness has been hardest for me after all those weeks of joyful gratitude.

My dad flies back to Oakland this Saturday (after two months in our home, two months of co-parenting my children while he also parents me), and the whole lot of us is sad about that. For me, it feels like another ending. What a rare and magical time this has been. (My mom will stay through February, possibly longer.)IMG_0269