Dwelling in Possibility

I’ve been pondering what to do with this blog much the same way I’ve been pondering what to do with my week, my year, my life. Everything is a swirl of dust these days. I don’t experience that as a negative. Living in swirls of dust is certainly challenging, but it is other things, too. There are particles of hope and love and inspiration spinning alongside the scary-side-of-the-unknown. There is doubt, uncertainty, sometimes even panic. (Where will I land? How will I land?) But there is also wide-open potential. There are whole new paths to carve, relationships to nurture, passions to explore. (Where will I land? How will I land?)

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My life is fraught with possibility.

Still, for the time being, I am swirling in dust, and how hard it is to take a step when everything around me is blurred.

But it is dawning on me, suddenly and miraculously, that perhaps my work is not to figure out where and how to land. Perhaps my work is to figure out how to float.

My life is not a life I’ve known before. I have one and one half feet out the door of a 15-year old-career, and rather than jam-packed days, I am hovering in hours of unstructured time. All three of these things are true at once:

  • I love my new life.
  • I feel terribly guilty about all this privilege.
  • I am (at best) slightly anxious at all times about how I use my time.

I like answers. I like clarity and direction and purpose. I like order. I like to have something to show for my day. I like lists and crossing things off of lists. I like movement: internal and external, physical and spiritual, tangible, emotional, interpersonal—you name it, I like movement.

But I also like the kind of quiet that only comes by slowing down. And I like the kind of possibility that only comes by dwelling in the unknown.

So many swirls of dust. So many crossroads.

I’ve written here before about trying to let the wind carry me (a beautiful way to float). But I realize I’ve been standing here, at point A, directing my gaze way out at the horizon, toward point B, saying, “Wind, please carry me there, to where all the answers are.” The “dawning” is that as long as I focus on the horizon, I’m missing the ground (or air) beneath my feet. “Be here now” has become a mainstream mantra as well as my own personal reminder, and tiny layer by tiny shift, I get a little closer to understanding how to be here now. This month, it’s with the realization that whether or not I’m in transition is beside the point. Even in transition, the point is not to get to the other side. The point is still—the point is always—to Be. Here. Now.

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Today is my birthday, and I keep thinking about what was happening one year ago. (I’ve actually been thinking about “one year ago today” for several weeks now. October started with, “One year ago today I found the lump,” and ended with, “One year ago today I was diagnosed with breast cancer.”) Now that it’s November 23rd, it is: “One year ago today, I was 5 days into my first chemo infusion.” One year ago today, I was so sick and so exhausted, that I spent most of my 40th birthday in bed, either sleeping or writhing or staring blankly at my wall. It was the very beginning days of, “I have never been so still.” It was also the very beginning days of a very long year of breast cancer treatment.

I am now in the beginning weeks of my first year post treatment. My last surgery was five weeks ago, and I am more or less physically recovered. (“More or less” because I have a long way to go before rebuilding the strength and stamina I lost to a year of aggressive chemo, radiation and surgery.)

I’ve written here before about how, for the majority of women, the first year post treatment is harder than the year of treatment itself. I know (and am comforted by the fact) that my current struggles are not unique, just as I know that in the months ahead, I will likely walk steep and treacherous road. In other words, I know I am not done with breast cancer. I know the hardest parts are likely yet to come. (Many of you know this because you know the same road. I hope the rest of you will realize it now, too: Your mother, sister, wife, daughter, friend who has just finished breast cancer treatment is not done with breast cancer. The hardest parts are likely yet to come.) All three of these things are true at once:

  • I am ready for the next leg of the journey.
  • I am terrified about the next leg of the journey.
  • I am brimming with eye-popping wonder about the next leg of the journey.

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For the last many days, as I start a new chapter of my life, I have wondered whether it is also time to start a new chapter with this blog. I know I will keep writing. I know that some (if not more than some) of that writing will continue to explore the impact of breast cancer in my life. I know that writers, like myself, want an audience and that I have been buoyed by this audience. I know that some of the blogs I most frequent are by women reflecting on life post breast cancer treatment, and that I could continue on here by doing the same. All of this is true, and yet, it feels like time to do something different.

I have no idea what that means, not yet, not amidst the swirls of dust. I think it is very likely that the “something different” will be a subtle shift: that I will continue to post here but with a new focus or a re-imagined site. I am not prepared to close the door. Instead, I am drawing a soft line in the sand; I am turning to a blank page and keeping the book open.

Until I return, I leave you with this picture of me cocooned by my wall of cards, which sprouted and bloomed over the last year. This picture, these cards, my wall — they are a tribute to my year, to so many of you, to what I have learned and survived and lost and loved. Thank you for walking here with me. I hope you will stick around and float with me for awhile, too.

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Grief and Gratitude

I am tired of writing about grief because I am tired of grieving. I have been here before, teetering at a crossroads. I have learned some things over the years, like the importance of letting myself feel whatever it is I am feeling. I have learned the difference between honoring my feelings and wallowing inside of them. I have learned (though I don’t claim to be perfect at it) to notice when it is time to make a conscious shift in perspective—when doing so doesn’t mean pushing away feelings that need to be felt, but rather, slowly shedding what is ready to fall away.

More than one person has reflected my experience back to me, describing my emotional state like that of a wounded animal. I have been battered, shell-shocked, shaking with fear, and hence too timid—and far too exhausted—to leave my den. But I have begun to sniff the outdoors; to circle the perimeter before crawling back inside.

I still carry my grief with me: somedays, like today, I carry it on my chest like a ten-ton weight; but yesterday I carried it in my back pocket and laughed like I haven’t laughed in weeks.

I know healing, like life, is not a straight trajectory. I know not to get too attached when the days feel easier, just like I know not to give up when the days feel unbearable. I carry a strength that I have built, one challenge at a time, brick by brick by brick, and it will get me through anything.

I carry fear and rage, but I also carry joy. These days, it mostly lives in my back pocket like yesterday’s grief, but I know it’s there. I can feel it like a seed, precious, with an entire garden living inside its shell.

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I want to water it with gratitude and watch it bloom:

I am grateful to be running again, slow and heavy, but running nonetheless.

I am grateful for all the women who, because they have been through what I have been through—are going through what I am going through—understand even when I don’t have the energy to explain.

I am grateful for this week’s sun, hot and bright and luring me out of my skin.

I am grateful for the people who have never waned in their presence and support; and for the people who have shown up unexpectedly with their presence and support.

I am grateful for my family’s tree-planting ceremony; and for our new tree (a
sweetly-sad looking specimen that will blossom into a beautiful weeping cherry); and for our meditating frog that makes me smile every time I look at him. (I’m not sure why I think it’s a him, since I usually go with “her,” but I do.)
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I am grateful that my children love each other the way that I always wanted a sibling to love.

I am grateful for my home, which wraps its walls around me like a cocoon.

I am grateful for Josh, my love, for loving me still. For loving me more than ever.

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Good-Bye and Good Riddance October!

October’s saving grace is that it is the month I became a mother and the month I get to celebrate my oldest child’s birthday (as well as my dear Mom’s birthday).

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I could otherwise do without October.

October is my cancerversary month. It’s when (one year ago) I found the lump in my left breast. It’s when (at 39) I had my first mammogram. It’s when the radiologist told me she had concerns about the imaging. It’s when I had my triple biopsy. It’s when the nurse called and said they found cancer in two of those sites and “pre-cancer” in the third. It’s when I was told I needed a left mastectomy. October is now (as of two weeks ago) also when my reconstruction failed and when I experienced what has felt like my second mastectomy in 5 months.

In addition to being my cancerversary, October is also (as so many of you know) breast cancer awareness month. Ironically, this is the first year that I’ve been aware of that. Though I was obviously plenty aware of breast cancer last month, my awareness has nonetheless been raised in the last few weeks:

I’ve become aware of outrageously insensitive campaigns like “Show your [bra] strap” and “No bra day.” I’ve learned about fabulous counter-campaigns like “Show your [mastectomy] scar.” (In case you were wondering, none of us who have been mutilated by breast cancer want healthy breasts shoved in our faces in the name of “support.” I can barely stand to watch movie scenes with women in bras because it is a painful reminder of so much that has been lost… and I have lost so much more than a body part.)

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I’ve become more aware than ever of the sexualization of breast cancer. (Isn’t it cute and sexy, all wrapped up in pink? Shall we flash some ta-tas and call it awareness?) How is it that events/ads like the one below are allowed to flourish? How is it that the entire world isn’t too utterly disgusted and ashamed to let this  happen?:

breast cancer sexualization

I’ve become more aware than ever of the commercialization of breast cancer. (Buy these cancer-causing products and 1 cent will be donated to breast cancer awareness! For just $___.99, you, too, can have this pink [insert pretty much anything]!) And by the way, some or NONE of the money will go to breast cancer research/support/awareness.

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I’ve also become more aware of how much money goes to “awareness” and how little money goes to actual research for an actual cure so that actual women will stop dying from a disease that actually does kill.

This month, I’m aware of how afraid I’ve become. I’m aware that living with this new fear—the fear that I won’t get to watch my children grow up—may be my new normal.

I’m aware of how apart I feel from most people in my life. I’m aware that most people in my life not only cannot relate to what I’ve gone through. They also don’t get the extent to which I am still going through something.

I’m aware that most people think my family and I are through the worst of it; that we’re on the other side of cancer. Just as I’m aware that in many ways, the hardest part has just begun.

Abandoning Fear, and Fearing with Abandon

I’ve been avoiding the blank page. I’m okay. Some hours I’m better than okay. But I continue to feel more shut down—both with others and with myself —than I have since I was diagnosed last October. I am carrying on with my life just fine. I get out of bed every morning. I shower and eat and go to meetings and take care of my children. I do what I need to do for work and smile at people on the street. I even laugh at times. But my heart does not feel open the way it usually does.

Over the last year, I’ve thought a lot about what I want to take away from my experience with breast cancer. Just last month, I wrote about how cancer is teaching me to prioritize joy—and to abandon fear in order to do so.

That has not changed.

However, this month I am steeped in a new awareness: I am aware that cancer has also taught me to be afraid in ways I never was before.
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As I write this, I am self-consciously aware of sounding depressed and negative. I feel the need to say, “I really am okay.” (And I really am okay.) I feel the need to say, “I’m a very happy, positive person.” (And I am a very happy, positive person.) I feel the need to say, “I know I have much for which to be grateful.” (And I do have much for which I am grateful.)

But I also feel the need to say that right now, I am hurting and scared and angry and uncertain and lonely. I feel the need to say that I feel abandoned, but I don’t know how to let people in.

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A Conversation with my Son

…Which I am sharing as a way to share what happened with my surgery last Wednesday, October 14:

“How’d it go today?” Harrison asked, somewhat tentatively. He’d spent the afternoon at a friend’s and was now lying next to me in bed.

Big breath. “It was hard,” I answered, just as tentatively. And then, worried that he would take that to mean there was a new medical concern, I said more. “It’s nothing at all for you to worry about. But they couldn’t make me a new breast, so now I don’t have one. I wasn’t prepared for that. I’m very sad.”

“Does that mean you’ll never have breasts?”

 “Well, I still have one. I’ll need to decide whether to have another surgery to make me another. But if I don’t have another surgery, no, I’ll never have a breast.”

 “Oh. I’m really sorry, Mama.”

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I can’t muster much more than that, other than to say that I am grieving and I am angry and I am rather shut down from the world.

And so it continues…

I feel like this:

head against wall

And this:

rage

And this:

crying baby

Last week, I was finally getting back on my feet: got the okay to exercise again and ran for the first time in a month; hired a sitter and danced a night away; embarked on my first big work trip in ages. But instead of truly getting back on my feet, I got another seroma. I’m having surgery, again, this Wednesday.

I was already feeling a swirl of emotion before my breast started swelling and throbbing again:

I was feeling daunted by the long road ahead of me toward a full recovery—feeling my lack of strength and stamina, my inability to exercise like I used to, to travel without ensuing exhaustion.

My surgeon says that this time, he doesn’t want me to exercise for at least 4-6 weeks. The road is feeling even longer, even more daunting. People assure me that I’ll get my strength back, but I’m not so confident. I am no longer the 36 year-old who ran 20-25 miles a week, often in 8-10 mile stretches, while working and parenting and socializing and dropping down for 20 push-ups when I felt like it. I’m now the 40 year-old who has been beaten down by a year of toxic treatment and two going on three surgeries and who can barely get through 3 miles at a snail’s pace; and when I do get through 3 miles at a snail’s pace, I then need to lie down on the couch to catch my breath and make sure my legs don’t buckle beneath me.

Even before this most recent seroma, I was feeling like people were done with my cancer, and I don’t blame them. It’s been a year, and trust me, I’m done, too. Except I’m not done.

I’m not done because I need to have yet another surgery and then who knows how many more after that, because who knows why I keep getting seromas and how to make them stop. But even before this latest medical frustration, I wasn’t “done” because as good as I am at feeling grateful for all the wonderful aspects of my life, I am also just on the other side of thinking I was going to die, young. And I am all too aware that I still could. That 30% of women with an early stage breast cancer diagnosis develop metastatic breast cancer. That my young age only increases my odds: More years during which my cancer could come back. For better, but also for worse, life will never be the same for me (or so I imagine, and so I hear from other women who have walked a similar road). I imagine I will forever feel the shadow lurking in the corner.

What, then, does “done” really mean? Will I ever be done with breast cancer?

Harrison expressed similar concerns when Josh and I told the kids this morning about this next surgery. It doesn’t help that Harrison turns ten next week and my breast cancer is, for the second year in a row, a dark shadow over his birthday festivities. But he said that even though he was disappointed about his birthday, that wasn’t the main upset.

IMG_2251“It just seems like it’s never going to be done,” he said again and again. “I want it to be over, and it feels like it’s never going to end.”

What is there to say to that other than, “I know” and “I feel that way, too” and “I’m so sorry you have to deal with this”? Of course I said all the positives I could, as well. But I am careful not to tell my children that I am going to be fine and that everything is going to be okay, because of course there is no way to know what will be.

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