A List of Ten

In this moment, I am thinking about:

  1. Breasts.
  2. And other things we tend to associate with—even expect of—women: red, high-heeled shoes. Eye shadow. Low cut shirts. Flirty laughter.
  3. I am thinking about what brings me joy (writing; sleeping in; a good craft project in front of bad TV) and what does not bring me joy (email; a growing pile of unread newspapers; too much of the consulting I do).

I am thinking about:

  1. Hot flashes.
  2. Summer, and what I’ll wear on my head so I don’t get sunburned.
  3. Which makes me think about hat shopping with Jenae and the fun we’ll have (because we always have fun); and about how safe I feel in her company.
  4. Thinking about “safe” makes me think about Maggie and Josh and even Sophie and Harrison who make me feel safe in a different kind of way because of the place they give me in the world. Because they bring me home.
  5. I am thinking about my home, and my bedroom, and my bed, and how even when I wake up not wanting to wake up, like I often do these mornings (not wanting to face the day, my life, me) how even then, I love being in my home and my bedroom and my bed. How safe I feel there.
  6. I am thinking about breasts again.
  7. I cannot think of how I want to end this list. Already I am thinking about a new list. Which makes me think about how hard it is for me to stay in the moment. How hard it is for me to quiet my mind. How hard it is for me to just be. I am thinking about how, when I was in the depths of chemo, I often thought, “I have never been so still. I have never been so still.” I am thinking about how much I would love to learn to be still.

Middle-of-The-Night Me

I don’t sleep like I used to. It’s not my typical insomnia of hours to fall asleep (though that happens, too). It’s restless night after restless night, many of them with hours of being awake while the rest of the country sleeps. It’s night after night of facing those middle-of-the-night thoughts. I hate those middle-of-the-night thoughts. I know not to take them too seriously. Know that everything feels darker in middle-of-the-night darkness. And yet, dark they (the thoughts) continue to be. Dark and heavy and bleak and stressful and sad.

They are not the inspiring, “What will I do with my one wild and precious life?” thoughts. They are the daunting and hopeless, “What will I do with my one wild and precious life?” thoughts. (On a brighter side, I laughed out loud this morning as I read what this writer had to say about her insomniac thinking.)

Earlier this week, I spent the night in a hotel room with 3 of my dear friends while 8 of our Imagechildren slept in hotel beds next door. I went to bed joyful about our April break getaway—emotionally filled up by watching our kids thrill over the adventure; filled up by talking for hours on hotel beds with girlfriends. In the morning, I got out of bed joyful about the day ahead—more hours of thrilling adventure; more time with girlfriends. So why, with joy on each end, does the middle-of-the-night still bring such suffering? Why, on this particular night, did I spend hours listening to the rain outside and the heavy breathing inside and the incessant voice in my head bringing up one dark thought after the next? Some detail about work: how did I not realize until now what I should have done but did not do? A changed friendship: would we ever get back to what seems lost? My upcoming surgery… and panic panic panic about everything having to do with that.

I spent this middle of the night thinking about this article and this blog post about the medical and emotional travails of reconstruction. About what feels like the looming loss of my body and of my comfort (again, physical; emotional). About what feels like a looming turning point that will forever divide my life into “before surgery” and “after surgery.”

“Before cancer” and “after cancer” carry a very different kind of significance, by the way. I was telling someone recently that though I would never have chosen breast cancer, neither would I wish it away at this point. There has been so much learning and growing and opening that I wouldn’t want to miss out on.

I do, however, wish this surgery weren’t happening. Will I feel differently somewhere on the other side? Will there be new learning and growing and opening that I am happy to receive in exchange for my breast?

I had expected the sleep to get easier on the other side of chemo. Had hoped that restful nights would seep back in just as the fatigue seeped out. (And the fatigue has seeped out! Two weeks ago, I never would have managed that 31-hour wonderful whirlwind getaway with 3 girlfriends and 8 children!) But last week, my oncologist said that no, my sleep issues are not because of the chemo—not the kind of direct result, anyway, that will improve now that the drugs are leaving my system. Rather, my sleep issues are a result of my chemo-induced menopause, and hence they are symptoms that just may stick around. (For the rest of my life? I am becoming my mother in ways I would rather not become my mother.)

Back from my 31 hours April break getaway, I did not wake up in a hotel room with friends, and perhaps that is why I woke up feeling sad. Because there was no immediate distraction to shake off the middle of the night. Though I did sleep more, I also dreamed of men with guns taking over my village. I dreamed what I used to dream again and again as a child but haven’t dreamed for years—of trying (desperately trying, such panic and fear) to find a safe corner to hide. Of never finding a safe corner to hide.

Am I hiding from the middle of the night? From my upcoming surgery? From some corner of myself? Am I hiding because these days, I struggle to answer that question: “What will I do with my one wild and precious [work] life?” When I find a way to live my passion, will I also find my safety—and maybe even a restful night of sleep?

Tell Me, How Do I Live My Passion?

One of my chemo gifts from Maggie was this long-beloved (likely by many of you, as well) poem by Mary Oliver (sorry about the formatting, no idea how to get rid of the giant spacing between lines):

          The Summer Day

          Who made the world?

          Who made the swan, and the black bear?

          Who made the grasshopper?

          This grasshopper, I mean—

          the one who has flung herself out of the grass,

          the one who is eating sugar out of my hand,

          who is moving her jaws back and forth instead of up and down—

          who is gazing around with her enormous and complicated eyes.

          Now she lifts her pale forearms and thoroughly washes her face.

          Now she snaps her wings open, and floats away.

          I don’t know exactly what a prayer is.

          I do know how to pay attention, how to fall down

          into the grass, how to kneel down in the grass,

          how to be idle and blessed, how to stroll through fields,

          which is what I’ve been doing all day.

          Tell me, what else should I have done?

          Doesn’t everything die at last, and too soon?

          Tell me, what is it you plan to do

          with your one wild and precious life?

What a perfect gift, since for weeks prior to opening this particular package, I had been exploring that exact question (not to mention the practice of being more present). For a good while, the question opened like a spring bud: glorious and inspiring, so full of possibility and hope. But lately, the question weighs on me like this east-coast winter weighed on many of you (not on me, I appreciated the fact that I was not the only one cooped up inside!); lately, the question feels heavy and dark, like a vast and sometimes hopeless unknown (or like one dark, cold winter day after the next).

What WILL I do with my one wild and precious life? More specifically, what will I do with my one wild and precious WORK life?

As I near the other side of breast cancer treatment, that question looms. How do I face the next phase of my life when I have no joyful clarity about my work-future?How do I compromise doing what I love to do—living the life of a writer—after vowing, as I faced death in a new way, to follow my passion? But how do I keep doing what I love to do when it will be time for me to get back into the game and once again bring home a regular paycheck?

How do I honor what I have learned these last months (what I am trying so hard to hold onto as I re-enter the world post chemotherapy: that life truly is short; that we can’t plan for the future because we have no idea what the future will bring; that we therefore have even more reason to savor the moment, live the moment, be the moment; even more reason to do what feeds our soul; that if we follow our passion and trust the universe, they will lead us where we need to go)? How do I honor all that while also being practical?

Which brings me to a new list of questions: Where is the difference between fear (“I need to take this work or I may not be able to pay my mortgage!”) and practicality (“If I take this work, I can pay my mortgage.”)? (Huh. Is there a difference between fear and practicality?? There must be… right?) How do I know when I am falling into an old, unwanted pattern of letting my fear guide me, versus responding to a practical need to make ends meet? And how do I balance the need to make ends meet with my unwavering, overwhelming desire to write—and not just to write, but again, to live the life of a writer. To get up day after day and spend my hours doing what I love to do (including “stroll[ing] through the fields… all day” if that is where the moment wants me; including being so present that I can see a grasshopper’s jaws move back and forth instead up and down); so that love and joy and passion and presence overflow into the rest of my doing and living and being?

flying off cliffTHAT is the one wild and precious life I want to live.

(Tell me, what is YOUR passion? What will YOU do with your one wild and precious life? I’d love a window into what feeds other people’s souls. Especially since I imagine that by sharing, we can help feed each other.)

Sharing the Guarded Facts of My Upcoming Surgery

(I think) I am ready to write publicly about my upcoming surgery.

From the beginning of my breast cancer experience, I have been very open about my diagnosis and comfortable with anyone knowing about it. I have felt rather private, however, about the details of my surgery; for the first months, I only discussed them with close friends. Though many people in my life surely know by now, they have yet to hear from me that on May 20th (just got the date this past week), I am having a left mastectomy.

uncertaintyAnd after months of being utterly torn, undecided, all-over-the-place about whether or not to do reconstruction—and about when and what type if I did reconstruction—I have decided to go with an implant at the time of the mastectomy.

Now I am staring at the blank page, not sure how to go on. Especially after baring my soul in so many other ways these past months and in so many past posts, why does sharing the fact of my upcoming mastectomy and reconstruction feel like one of those dreams where you (or at least I—have you had such dreams?) show up to work, or to the biggest party of the year, or to your children’s school, stark-naked?!

In one of her blog posts, Hareem Atif Khan shares that talking about her breast cancer—and even seeking medical attention at the first signs that something might be wrong—was hard because it meant talking about her breasts. Perhaps it’s because I am an American not a Pakistani woman that I am more comfortable talking about my breasts…. though only up to a point, it seems. I can talk breast  Imagecancer and chemotherapy for breast cancer and even surgery for breast cancer (breast, breast, breast). But talking about my actual breast—no, talking about the removal of my actual breast—suddenly makes me want to cover every inch of my body and point in the opposite direction so that no one will look at me. The real truth is, knowing that people will inevitably look at me and think, “She lost her breast,” made me feel “less-than” (and a lot of other unpleasant adjectives, too).

It took me many hours, days, weeks of thinking, talking, writing, researching, reflecting to get me to a decision about reconstruction. Though it feels like there were dozens of reasons for my uncertainty, I think I can actually pinpoint four of them.

One the one hand, there were my reasons to not reconstruct:

  1. My desire to resist a culture that makes women feel less-than for not looking a particular way.
  2. My commitment to not rush the healing process by trying to replace what is lost.
  3. My fear of surgery.

On the other hand, there was:

  1. My desire to feel comfortable in my body as I move through the world. My fear that I would not. (Is that two reasons?)

It is not that my list of “one” won out over my list of “three.” It is that the thinking and feeling behind my list of three changed.

Reason #1: I still want to resist a culture that makes women feel “less-than.” But I no longer feel the intense self-judgment about not resisting with my own, un-reconstructed chest. (I still don’t fully understand why I’d been so burdened with guilt, seeing as I’ve spent a lifetime resisting plenty on the one hand, but perpetuating the culture on the other with all kinds of behavior, such as donning make-up and high-heeled shoes.)

Reason #2: I still don’t want to rush my healing process. But I no longer feel like immediate reconstruction would be rushing my healing process—presumably because I’ve had more than five months to digest the fact that I have breast cancer and will need a left mastectomy. (Which doesn’t mean I don’t anticipate the need for more healing on the other side of my surgery. It just means that I am in a very different place than I once was.)

Reason #3: I’m still afraid of surgery. Which is why, when I started leaning toward doing reconstruction, I ultimately decided to go with immediate implant reconstruction—because if all goes well, I won’t need any additional, major surgeries (just a couple of outpatient procedures).

(I may share more about my decision-making process in upcoming posts. In the meantime, for more information about reconstruction, you might visit breastreconstruction.org. To read more about the choice to not reconstruct, I highly recommend breastfree.org.)

What makes me feel young

What makes me feel old:

  • Real live (young) adults who were born in the 90s.
  • My son (how do I have a nine year old?) and daughter (when did she get so tall?)
  • Gray hair and belly skin that sags when I bend over.
  • Aching joints—and conversations with friends about aching joints.
  • My (almost) 20th college reunion.
  • Men (boys?) who were born in the 90s and don’t notice me.

What makes me feel young:

  • Getting breast cancer at 39.

Every doctor visit, every chemo infusion, every piece of paper with my birth date and “breast cancer” written on it, reminds me of just how young I am.

The End of Chemo: Reflections, Remembrances and Readying for the World

Yesterday was my last chemotherapy appointment. After 4 ½ months and 16 infusions, I am finished with the first phase of my breast cancer treatment. For the past week, I have been battling severe, free-floating anxiety, which I now think had as much to do with the anticipation of this new change in my life as it did with all of the life-details to which I was attributing the stress. As mentioned in my last post, reaching this momentous occasion has been bittersweet. (In a much earlier post, I write about the mixed feelings many people experience as and after they finish cancer treatment.) Bittersweet because it means saying good-bye to all of the caretakers I’ve gotten to know at the Cancer Center; good-bye to Maggie’s packages of delight; good-bye to my routine.

But last night I realized that there is something much bigger burning beneath the surface. The end of chemo brings with it yet another significant and in many ways unknown life change, much the same way my cancer diagnosis did. With any significant change, uncertainties abound: What now? And, What do I want now? And, How do I actually make happen what I want now?  The unknown is, in and of itself, often scary (even when it is also exciting).

But it’s more than facing the unknown.

When I was diagnosed with breast cancer, all of the unknowns swirled around inside of me as my life transformed in ways that sent me INWARDS. Into my house, into myself. I was too sick to work, to socialize, to go outdoors.

With the end of chemotherapy, all of the uncertainties are once again swirling, but this time, as life is sending me back OUT. OUT into the world. And despite the fact that there are many ways in which I have always loved going OUT—love socializing, love traveling, love collaborating, love making new connections—going out into the world has also always come with a degree of fear.

Almost every morning, when I bring my 6-year-old Sophie to school (or say good-bye before sending her off with someone else), she clings for one more hug, often her eyes well with tears, she braces herself to leave my side and venture out into the world on her own. Amazingly, she goes; never has she grabbed hold and begged and cried (for which I have the deepest awe and respect). (Thankfully, it only takes her a couple of minutes to feel settled and safe in her classroom.) I understand her lingering completely–which only deepens my respect and awe. As a young child, I also struggled with school mornings—and then as an adult, with work mornings. I have always awoken to those mornings with a sense of loneliness and a touch of fear in my gut. I have always had to brace myself to face the wide and scary world on my own.

I think I am bracing myself now.

As I brace myself, I know that I desperately want to hold onto what I’ve learned these last several months about who I am, who I want to be, how I want to live. And I know it is much harder (at least for me) to stay grounded and true to myself when I also need to navigate the wide world and all of life’s realities.

But perhaps this is the meaning of life. Perhaps we—perhaps I—am here to find my truth, and then find ways to live that truth, not in a bubble, but in the day-to-day, real-life, wide and scary world.

Already I am feeling so much more grounded than I did over the past week. Perhaps it’s the newfound clarity rising to the surface. Perhaps it’s simply getting past the anticipation of the end of chemo and to the actual end of chemo. Whatever the reason, I am relieved and grateful to be more comfortable in my body (that the intense anxiety has eased for now). I am also feeling more excitement than fear (in this moment, at least! who knows what the next moment or tomorrow will bring!) about whatever might come next.

Before I close the door on my chemotherapy, I want to look back and remember and share with you the many wonderful people who took me to, and took care of me, during my 16 infusions.

Jen (on the right), my regular chemo nurse, who, after years as a hospice nurse, knew well how IMG_0420to take care of people in the midst of major life challenges and changes. Over the last several months, I learned about her four children and her police officer husband and her love of reading.

And Joanne (to my left), longtime nurse who then turned massage therapist about 20 years ago, after caring for her 6-year daughter old when she was diagnosed with cancer. (Her daughter is now 28 and healthy as can be.) Most weeks, Joanne would massage my shoulders or my face or twice, my feet, while we slowly got to know about one another’s lives and hopes and fears.

IMG_0518Kayla, who always took my vitals with a smile and brought me a warm blanket and chatted with me about our weekends and our children and made me feel welcome and safe and seen.

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Annie (aka “Borgy”), whom I designated as my god-mother when I was nine (despite the fact that she is Jewish, and I have never been religious); and whom I’ve always referred to as “another mother” to me, since she has known and loved and cared for me since the day I was born. She traveled 2 hours from Hunter Mountain—twice—to take me to chemo (and to take care of me during the aftermath). (Unfortunately, I don’t have any pictures of us during this time, but here’s a picture of her:)

Jenae, soul-friend-extraordinaire, who traveled three hours from Brooklyn to take IMG_3116care of me in the days before my parents arrived. During that time, she took me for my post-chemo fluids and steroids, which was identical to a chemo visit aside from what they were pumping into my veins, so I’m including her here (with a pre-chemo photo of us; she’s on the right).

IMG_0261My parents, Sula (aka “Amma”) and Harvey (aka “Zayde”) who took me to the bulk of my infusions, where we usually talked, sometimes did a bit of reading, very occasionally watched TV when I was too zonked to do anything else, and then toward the end, discovered the joys of travel Scrabble at chemo infusions!

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Maggie, my soul-mate, sister-friend for the last twenty-plus years (and the giver of all those chemo gifts), was usually teaching 2nd grade when I was at chemo, but thankfully had the chance to take me when she was on school break… and then Josh, who was doing a rotation next door, surprised us on his lunch break!

And my other (in addition to Maggie) nearest and dearest Northampton friends (who did so much more these past several months than take me to chemo):

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Hannah Ray! (left) and Keegan (right)

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Angela and Clover (left) and Jen and Nunia (right)

And I have to tuck in Jain here. Even though she never officially tookImage 3me to chemo, she did pop in for visits before and after and in between her midwifery shifts next door. (Again, no chemo picture, but here we are at an American Hustle dress-up party—Jain is the curly red head on the right of me in a wig.)

The end of chemotherapy brings other endings, as well.

One more chemo to go! The feeling is bittersweet (similar to what I wrote about in an earlier post), for there is so much more that will end along with the chemicals pumping through my body: Weekly visits with the nurses I have slowly come to know over the last almost-five months. Three hours of quiet quality time in the middle of the day with whomever brings me. My current routine. And the weekly delivery from dear friends-family, Maggie and Barry.

IMG_0115The first time I went to chemo, Maggie sent me with a bag of gifts, each one individually wrapped with a time taped to the front—my instruction for when to open it, one every 30 minutes for the duration of my infusion. A bright green blanket; a dozen paper hearts, decorated by the family (her and Barry; Owen and Henry) and strung on a piece of ribbon; lip balm; a clementine with a glitter-heart stuck to the peel; the coziest of socks. It was just the thing Maggie would do. The sort of thing we’ve been doing for each other for 20 years now.

A week later, another bag of gifts arrived (once again delivered by Barry on his way to work) and it dawned on me that she might try to do this every time I went to chemo. “Maggie,” I explained, “It’s too much!” After all, I had four and a half months and 15 infusions to go. (And she had a 60-hour-a-week teaching job, twin 5 year olds, a husband, a home, my Caring Bridge site to manage, chronic Lyme disease and friends other than me.) But chemo-day after chemo-day, Barry would arrive while those in my house were bustling about getting kids ready for school and me ready for my appointment, and he would deliver yet another bag of individually wrapped gifts, each one with a time taped to the frImage 1ont. Sweet-smelling hand-sanitizer for my purse; hot pink slippers; hand crafted book marks by each of their sons; a cheetah hat; a pair of sassy underwear; a deck of cards; a puzzle; a poem… the list truly goes on and on and on. (Here is a wee fraction of the seventy five or so gifts Maggie has bestowed upon me since I started chemo in November.)

IMG_0259Some weeks ago, about half way through my infusions, my mom passed me the next little package, and I realized just how much I’ve come to count on Maggie’s gifts. “I know I’ve been encouraging you to stop,” I told her later. “But now I don’t think you can.” I’ve come to depend on those packages over the last few months like I’ve come to depend on Maggie over the last two decades.

Even though I will be saying good-bye to the bag of goodies when I say good-bye to chemotherapy, thanks to the chemotherapy, it looks like I won’t have to say good-bye to Maggie anytime soon.