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.
fear chasing

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.

hurting heart

Crashing in the Wave

I stumble over my answer to the question, “How are you?” because I don’t really know what’s going on with me these days. Except that I’m not fabulous. Some hours I’m not even sure if I’m okay. But then I think maybe I am, after all. (In other words, there are all kinds of confusion, not to mention all kinds of emotion, swirling around on my insides.) How can someone (me) who analyzes and reflects upon and over-thinks just about everything not even know how I feel?

Last night, I told Josh, “I feel separate from everything.” Not in a woe-is-me, no-one-understands kind of way. In an I-feel-like-I’m-in-a-haze kind of way, and I can’t even access myself, much less fully engage with the world or people around me. At times, I feel like a wax figure, fake-experiencing my day.

Except mostly it’s not so neutral-numb-feeling, because I also feel like my whole body is a grasping fist. (I am trying, oh how I am trying to let go, to let that wind carry me, but I feel like I am in an almost constant state of contraction.) Every – little – thing – overwhelms me. How is it that prior to my breast cancer diagnosis, I was working close to full time, more or less single-parenting two kids while my husband put in his 80-100 hours/week of grad school, engaging in a busy social life, making home-cooked meals and paying bills and cleaning my house and returning phone calls… and now, I can barely get my kids a cup of water without feeling like there is too much on my plate? That’s a bit of an exaggeration, but only a bit. I’m not working and my husband is home for the summer, so my main commitment is co- (not single) parenting and getting to doctor appointments, and yet (here it is again): every little thing overwhelms me.

HeadOnDesk But here’s the other thing that scares me: I’m not keeping up. I’m used to overwhelm, but I’m also used to that overwhelm making me highly productive. Thanks to my Type-A personality and fairly constant free-floating anxiety, I’ve gotten a lot done in life (successful career, happy kids, hand-made gifts, clutter-free home). So the fact that it takes me days to listen to my voicemails (I’m so sorry) and that the other day someone emailed my mom looking for my new address because I hadn’t gotten back to her (nope, no new address here) and that I haven’t read the newspaper in weeks (just keep looking over my shoulder as I slide it into the recycling bin, hoping no one will catch me being terribly uninformed while also unnecessarily destroying trees)—well, it’s disconcerting.

For decades, I have longed to be less Type-A because I have longed to be less anxious, more laid back, more able to, say, sit still rather than being in constant-doing-motion. When I was in chemotherapy and as still as I’ve ever been in life, I had one of those “cancer changes you” commitments to once and for all live a slower, simpler, calmer life. I say this because, if dumping my unread paper in the recycling bin and letting people wait before getting an email response was making me more relaxed, I’d rejoice. But the fact is, now I am anxious and unproductive… which only makes me more anxious. (Not to mention bummed out that my cancer-commitment to change my life isn’t working out so well these days.)

And just about everything gives me yet more reason to feel anxious. Like finding this blog that I absolutely love: Invasive Duct Tales. I literally (yes, literally, not figuratively) feel like I am reading my own writing at times. Which sounds egotistical, that I love it because I love my own writing; but I love it because I feel like I’ve found someone on the internet to whom I can relate—someone who makes me think, “Me too!” And of course there is comfort in that. But reading it yesterday, I suddenly felt the opposite of that expansive-love-feeling; I felt that contracted-anxious feeling, because she’s a successful blogger with awards and gazillions of followers and cancer-has-opened-unexpected-doors opportunity and me, all I am is a wax-figure lump surrounded by unopened mail. (You really should check out her blog, though. In fact, I thought about simply including a link to her most recent post in lieu of composing my own since I felt like 92.4% of what she wrote could have been describing me, including the fact that her husband is named Josh—that, and how she describes her mood, and her reference to “riding the wave” which is how I’ve described my cancer experience and hence titled my own blog, really did make me wonder for a second whether I had somehow gotten confused and truly was reading my own writing.)

Writing this post has me thinking a few new things:

  • I sound like I am describing a depressed person, which is eye-opening, since I’ve really felt like I wasn’t depressed anymore; but maybe I have a touch of it after all.
  • Does this post really have to do with breast cancer, and isn’t that what I’m supposed to be writing about here: riding (writing) that wave? Have I derailed? And either way, aren’t people sick of hearing about my emotional state? I can add that to my list of anxieties. I’m (sort of) joking.
  • I actually think my current state has everything to do with breast cancer. With my hormone treatment. (I’m going to keep blaming it on that, okay? It makes me feel less pathetic, less like it’s my fault that my family has to put up with irritable, unpredictable me.) With the fact that I don’t feel comfortable in my body anymore and even wonder whether reconstruction was a mistake. (I’ll save that for another time because I can’t handle opening that door any wider right now.) With my fear that the cancer will come back. With the fact that I look at my daughter and wonder, “Will she have to go through this some day?” With the fact that my body feels tired and old and broken down by months of treatment and even though everyone keeps saying I’ll get my stamina and strength back—that, for example, I’ll be able to run faster than an 11-minute mile or more than 3 miles in a row again—I’m really not so sure.
  • It’s time to get back to my gratitude practice.

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.

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.)

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.)

My Fear Is a Broken Dam

One week ago today, Josh and I met with my new surgeon (the old one being out of commission for awhile because of her own hand surgery). I wasn’t expecting the appointment to be emotional, rather just a “Hi, good to meet you,” and a standard check-in as I near the end of chemo and get ready for surgery (which is yet to be scheduled but should be sometime the week of May 18th).

It was just a “Hi” and a check-in, and yet, as soon as Josh and I were alone, I cried. I’m often surprised that I don’t cry more often, seeing as I am not only a deeply feeling person, but I also tend to wear those feelings openly. And yet, I’m not a big crier, can count on one hand the number of times I’ve cried through this experience. I admit, the crying feels good. (I also admit that though a full-blown cry-fest is rare, it’s not rare at all for my eyes to fill with tears; as my children will attest to, it happens almost anytime I read aloud a good book, for example.)

It feels good when my body makes tangible the inner emotion. It also feels good to cry with Josh, to feel his arms around me, to feel how much we are in this together.

Like earlier in the month, which was a second time I cried. (Twice in one month!) Josh and I were propped up in bed, side-by-side with computers on our laps, him studying away, me surfing breast cancer blogs as I got ready to launch my own. In the last few weeks, it seems I have suddenly been flooded with stories of recurrence: of women who, like me, were diagnosed with breast cancer at a young age. But then years later, they were diagnosed again, and for many of these women, recurrence came with metastasis.

Sitting in bed with Josh the night of my first March cry, I was reading about Lisa Bonchek Adams, mother of three who passed away a few weeks ago of metastatic breast cancer, several years after she survived breast cancer the first time. And I burst into tears. (A full-blown cry fest this time.)

Mostly, I am not afraid. Mostly, I don’t think about death and dying and leaving Josh behind and most heart-wrenching of all heart-wrenching thoughts, leaving my children behind. Mostly I don’t think about not seeing them grow up, about not watching them fall in love and about missing their first broken heart; about never seeing their first apartments, never knowing what they’ll do for work, not watching them become parents themselves.

But in moments, like the other night, the fear rushes through me like a pounding river, like a broken dam, like a flood. And in its wake is a tremendous grief. Grief about something that hasn’t happened yet and hopefully never will happen, but it could, it could. And Josh and I know that more than ever now. That life is tenuous. That this moment really is all we have for sure.

A fight with Josh, my bald-head, and being in love

Josh and I had one of our rare “fights” a couple of weeks ago. “Fights” in quotes because I’m not sure we can really call it a fight. Our “fights” tend to be more of a brief turning away from the other: someone snaps, the other person snaps back or storms off, and usually within the hour, there’s an apology, an explanation of what was really going on beneath the snap, a hug, a commitment to be more this or less that with one another, a mutual acknowledgement of how much we love each other and of how very lucky we are to have what we have—including a relationship that is filled with passion but not much turbulence.

When we got married 10 years ago, we each wrote a letter to the other which we shared for the first time during our ceremony. In my letter to Josh, I included part of a journal entry that I had written nearly four years prior, on February 1, 2000: I have been deeply affected by someone today, and it is almost unfamiliar, the intensity of it. I am deeply aware of how other-worldly this thing feels. “I could go places with you,” I said. And I feel that so completely, it is startling. My eyes have been opened to something. I have seen what is possible.

 For fifteen years now, Josh and I have been nurturing “what is possible,” and perhaps that is why, where we once slammed doors and screamed at the tops of our lungs and stomped around in anger and in hurt for hours (days?) on end, we now move in and out of our shared and individual space with much more compassion and forgiveness and grace.

Which doesn’t keep us from hurting one another now and again, sometimes intentionally, sometimes because of a temporary lack of awareness, of which we were both guilty during this most recent fight.

We were getting ready to go out to a party. A real-life, actual party, which is the opposite of what I’ve been interested in doing these days; despite the fact that I have always loved a good party, lately, the thought of big crowds and small talk has been at the bottom of my wish list. So I wasn’t going to go. But Josh would be playing music (guitar, singing), and I didn’t want to miss it. And as the party came up in conversation with this dear friend and that dear friend, I found myself getting excited for something like this for the first time since my breast cancer diagnosis.

So here I was getting ready for my first big party in months, and I didn’t know what to do about my hair—or lack thereof. At first I planned to wear the wig I bought months ago only because it was covered by my insurance. The wig that I have only donned once since losing my hair in the beginning of December because it makes me feel like an imposter, like I am trying to be someone else, someone without cancer. (Which, let me be clear, I think is absolutely, positively, 1000% appropriate and understandable: that someone with cancer and without hair would want to sport a wig and move through the world as NOT a sick person. But for whatever reason I have yet to fully understand, wearing a wig—unless it’s an obviously-not-real-hair-bright-purple-wig—has not been for me.)

I didn’t want to wear the wig. I wanted to wear nothing (on my head, that is). But I was terrified to wear nothing. It’s been below freezing for months now. I cover my head everywhere I go, inside or out, with either a winter cap or what I refer to as a “cancer hat,” so that now I feel utterly naked with my head exposed. And yet, it has started to feel important to expose my head. Soon it won’t be freezing; and already, there have been times when I have been hot but have hesitated to remove my hat. I don’t want to be hot because I am afraid to remove my hat. I don’t want to do or not do anything because I am afraid. (As I write this, I am compelled to share the fact that twenty or so years ago, I shaved my head by choice… though “shaving” really meant the closest of buzz cuts. I tried unsuccessfully to pull up a photo. Picture me with chubby cheeks and black stubble across my scalp…. which now compels me to to share that today, my slowly-growing-back-hair is almost entirely white.)

So as I stood in front of the mirror a few Saturdays ago, putting my wig on, pulling it off, putting it on, pulling it off, I was trying to figure out whether I had the courage to “own” my bald head. And when I turned to Josh, asking him what he thought about me going to the party bald, he hesitated and gave a mild, “Whatever you want to do, honey.” That’s it: a little hesitation and a mild response, that was all it took for me to shut down. I went silent and cold (but still bald! I’m proud of that!), and we kissed our kids and my mom and left the house knowing we were in one of our fights.

As planned, we stopped for a drink, just the two of us, and this is what transpired: Josh, my love, my love, explained what was behind his cool response. That every time he sees me with my “cancer hat,” he sees his mom, who wore a similar hat before she died of ovarian cancer nearly seven years ago, at the age of 63. That of course he thinks I should go bald if I want to go bald, that he thinks I’m beautiful and courageous and strong. But that sometimes, he wants to forget that I have cancer. Sometimes, he can’t believe that cancer is pressing up against his life again. Sometimes, like in that moment when I asked about going to the party bald, he wished he could cover it all up and make it all go away.

Listening to Josh, I immediately softened, and just as quickly as our “fight” happened, our fight was over, and we were squeezing each other’s hands across the table, and I was telling him how grateful I am that he responded the way he did to my bald head, because it led to this conversation, and that I was so sorry he’d been seeing his mom in me all these months that I’ve worn that damn cancer hat, and that I want him to talk with me more about the thoughts and feelings I know he tries to protect me from, like his fear of me dying like his mom died, and that I was so sorry I haven’t checked in with him more these last weeks, and that I love him, I love him, I love him.

Image 5And then Josh and my bald-head and I went to the party. And while I can’t say that my breast cancer went away for either one of us that night, we both had the kind of fun we used to have before this crazy cancer-journey started.